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I’m back and mostly recovered from my recent non-stop campaigning for our local school levy. I was eating, breathing, sleeping CHUH for a few days there, hence my uncharacteristic absence from the blogosphere. But we had a resounding victory here, with the community stepping up and supporting public education despite tough economic times.  The margin of victory was larger than any I remember, a whopping 14 percentage points.  Dare I say the tide is turning for the Heights Schools?

Last night, we hosted an Open House for prospective kindergarten families at Fairfax, of which we are one.  I watched Austin stand up there next to his future classmates, awaiting a turn at the SmartBoard, and I was struck by what a big and capable kid he has become. I’m pretty sure he would have been fine in kindergarten this year, but I have no doubt that we did the right thing giving him one more year of preschool.

I had his first parent-teacher conference of the year this morning and she said he is doing fabulously. Both academically and socially, he is absolutely on target — better than on target: he is thriving.  And it is really a joy to see.

He plays nicely with everyone, boy or girl. He is always engaged in classroom activities (as evidenced by that little tongue sticking out), and especially likes the weekly “challenge.”  He is getting mighty close to reading and has a mathematical mind that blows me away (much like his brother and unlike his mother).

His teacher has created a magical environment where the children believe they are just playing and yet learning is infused into everything they do. Each activity and project is carefully selected to enhance some specific skill, either academic, social or physical. I wish every child could experience this kind of classroom before moving into the big (structured) world of kindergarten.

For Austin, I know that this was a decision we will not regret.

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My, what a year can do.

Austin’s last day of preschool last year:

And Austin’s last day of preschool last week:

Which of course brings us back to that pesky old question: Was that his last last day of preschool?

Weeeellll, I don’t think so. I’ve been leaning more and more in the direction of not sending him to kindergarten next year. I’m still not completely positive because I do have moments when I think he should go, but with the exception of my mother (an avid rule follower) and a very few others, everyone has told me not to do it. The most resounding No’s have come from teachers. Not teachers who are saying that Austin himself isn’t ready, but teachers who say that any boy with a borderline birthday isn’t ready.

I guess it comes down to which decision we’d regret more and it seems much more likely that we’d regret sending him and having him struggle as the youngest than holding him and having him be the oldest.

We can register him for kindergarten through August so there’s still a chance he may go, but for now, it’s pre-K for Austin.

Even though he has already mastered a skill that Braedan practiced the entire summer before kindergarten: the monkey bars.

The fascinating thing about that last day of chemo a year (and two days) ago was that we didn’t know it was our last.

I remember the day pretty well and I mentioned it in this post. You can see that I never said anything that sounded triumphant or victorious, I never used the words “relief” or “finally,” there was no mention of celebration. We finished on time (and celebrated that small victory), kindly waved to the nurses as they buzzed us out the door, and shouted out a cheery, “See you soon!”

But we didn’t see them soon. Austin spent the next few weeks in the outpatient clinic receiving platelets and blood transfusions, while Mark and I spent the next few weeks researching obscure medical journals, weighing our pros and cons (with the cons always heavily outweighing the pros) and trying trying trying to settle on the right choice.

The right choice eventually found us, thanks to some timely emails from prominent Wilms tumor doctors across the country, and chemo was over without us ever having celebrated that last day. There was no victory lap around the oncology hall, no clapping and cheering from the beloved nurses as Austin completed yet another round. It was instead an ordinary day. We walked out of those hospital doors and, unknowingly, began our ordinary life again.

There’s a victory lap in that.

Soooooo, today was kindergarten registration day at Fairfax.

My PTA job doing outreach to the incoming kindergarten families required that I be there for the entire two-and-a-half hour event this evening. I oversaw an art project for the kids who came along with their parents, took families on tours of the building, and answered lots and lots of questions.

But I did not register my own child.

Of course, it’s not too late. I have all summer to register him at the Board of Ed should we change our minds. But for right now, as of this particular day, we will not be sending Austin to kindergarten next year.

Is it the right decision? Who knows. But I do know that it’s not the wrong decision.

You, my trusted and loyal community of readers, have helped me work my way through several major decisions over the past year. First, there was the should-we-or-shouldn’t-we-continue-with-chemo conundrum. Then, of course, came the awful choice between removing Austin’s kidney in a preemptive strike against the possibility of cancer returning thus subjecting him (and all of us) to two years of hemodialysis followed by organ transplant versus trusting that surgery, chemo and radiation had done their job in wiping cancer out of his body. Then there were the smaller decisions about my book and how to incorporate the third section and what to title it. And who can forget the still-unresolved issue of when to send Austin to kindergarten?

But suddenly I have a new decision to ponder and, boy, is it a doozy.

Next year is the tenth anniversary of the St. Baldrick’s event in Cleveland and to celebrate, the planners are trying to enlist ten moms.

As in, ten moms to shave their heads.

Oh man, it makes me nervous to even think about! I want to do it. I mean, I think I do. At least right now, when it’s nothing but an idea, tucked safely eleven months into the future. I’m not worried about how I’d feel that very day. I’ve seen women do it, fourteen of them last week, and they all look strikingly beautiful and very very proud of themselves. (See professional photos from the event here; my family is between 83 and 120.) But the next day or week or month, when they have fuzz sprouting from their heads and have to attend someone’s wedding or a business meeting or who knows what . . . that’s the stuff I worry about.

I know, it’s only hair and it grows back. But it’s hair and it grows back pretty slowly, especially when it’s as long as mine is now. For the past few days, I’ve suddenly found myself admiring my hair, which is not something I’m used to doing.  I’ll catch a glimpse of myself in the mirror and think, uncharacteristically, “Wow, my hair looks so full and shiny . . . do I really want to shave it all off?” Classic case of the grass being greener, I think.

It would make quite a statement though to have ten mothers of cancer patients stand up their together and make that sacrifice on behalf of their children. Ten years, ten moms, ten thousand dollars (each!). That would be my motto.

I know how I am. I know I’ll have moments after the fact when I’m in a major awkward stage and feeling rather ugly, when I would question my decision. But I also know that if ten moms are going to sit in AJ Rocco’s next March and shave their heads, there’s no way I’m not going to be one of them.

OK, this will be my final public mulling over when to send Austin to kindergarten. For a little while at least!

My big issue right now is that I feel like sending him this coming fall is the RIGHT thing to do. Yes, he would still be only four for the first few weeks, but the official deadline is September 30 and he’ll be five by September 30. So unless I have a very good reason, an actual developmental or physical delay, then he should go. (And, amazingly, he doesn’t have any documented or even suspected physical or developmental delays.)

Somebody has to be the youngest kid in the class, so why not Austin? I’m not certain that being the youngest is always a disadvantage anyway. I know plenty of people, both my age and currently in school, who didn’t mind or don’t mind being in that position.  In fact, Braedan had a neighbor friend over the other day who is the youngest boy in his fourth grade class, yet another late September birthday.  I asked him about it and he said he truly doesn’t care. He said he’s smaller than most kids (but not all) and that some who are even younger are bigger so that’s irrelevant. He does extremely well academically and has no problem fitting in with his peers. He said it hasn’t once been an issue for him thus far in his schooling.

When I spoke with his mom, she said that, back when she was making the decision to send him, a concerned friend said, “But don’t you want him to be a leader?” She said, sure she did, but that he was going to be a leader no matter what. He is a leader. Personality does that, not age. Heck, Braedan could have started kindergarten when he was four and it would have been no big deal. Not that he’s some super genius, but he’s always been emotionally mature and quick to make friends and feel at ease in new situations and he would have done just fine.

So anyway, what I’m saying is that Austin being younger than his classmates by eleven months or ten months or nine months is not a worry for me. So what? There’s automatically going to be a range of kids in a class, some with birthdays up to a year behind the others. What does worry me is the other kids who get held back, the June and July and August kids (boys especially) who would be several months beyond six when they started. It’s that awful “everybody’s doing it” problem. I don’t want to hold him back, but I’m afraid I might because everybody’s doing it. I sort of feel like we get screwed by the people who (in my opinion) should send their kids on time but don’t.

Now I know a lot of you have shared your own experiences with me, both here and in private emails, and I don’t want to offend anyone by having asked your opinion and then saying I think what you did is wrong. And I know that everyone thought carefully about their decisions and of course has every right to make whichever choice they want. But maybe that’s my real issue — maybe I wish we didn’t have the choice. If there was one national law with one national deadline and you simply had to send your kid, then this wouldn’t be an issue for any of us.

But of course it is. You can tell that I would really like to send him, but I will continue to think this over and discuss it with Mark and Austin’s teachers and others.  And then, when the time comes, we’ll make the best choice we can and, once we’ve decided, we won’t second guess ourselves and will just live with the consequences. Like we do with all the other decisions we’ve had to make.

There were a lot of other doctors’ appointments that took place on Thursday and Friday . . . or didn’t take place. The vein mapping for placement of a dialysis catheter was postponed. It had been double booked with the chest CT, which obviously took precedence especially due to the concern with the liver. The vein mapping, as I explained last week, is for something we hope is way off in the future and actually something we hope never ever comes. So that one’ll just have to be rescheduled (or not).

Then on Friday, Mark took Austin to have his stitches removed. Remember how the hand surgeon had been upset with the type of stitches the ER used? Well, with good reason. He removed the three from Austin’s palm (the least sensitive and least mangled part of his hand) amidst so much screaming and squirming that we rescheduled for this Thursday so they can do it while Austin’s under sedation. They’ll just administer propophol through a gas mask and rip them out in ten minutes, saving the little guy any more unnecessary misery.

The hand is definitely healing though. When we change the dressing covering it, I’m no longer worried about infection since you can tell it’s all closed up nicely. Thanks goodness there.

And, and this is the best part of all, his Thursday labs revealed that his creatinine has lowered yet again. Still not in the normal range for a child his age, but getting mighty close.

Every time I look at him dancing about in his goofy way, playful and happy and unencumbered by disease (or — often — by clothes), I feel so thankful we have made this choice. We will never regret having these days.

Yesterday went mostly well. “Mostly” because there’s never been a time we’ve had scans when the response is simply, “Perfect, great, everything’s just ducky.  Go on your way now, you healthy normal people.” No, not quite that.

First, he had the follow-up with the radiation oncologist which was fine (actually a lot like what I said above). Then the abdominal ultrasound which lasted a good two hours including the long wait time between being seen by the technician and being seen by the actual doctor (I’ve never really understood why they bother with the technician at all if the doctor just has to come and do it all over again, but anyway . . .). There is nothing new in the kidney, which is obviously good news. But there is a spot in the liver. Now, don’t freak out, it’s not a tumor. Or at least we don’t think it’s a tumor.

It’s more blob-like, where tumors tend to be round (heard that one before, right?). The radiologist thinks it’s most likely “fatty infiltration of the liver with focal fatty sparing” which makes the spot. Whaaattt? I can’t explain it any better than that but it’s not anything to be alarmed about, a not dangerous and not uncommon side effect of chemo. But of course, we can’t be positive that’s what it is based on ultrasound alone.

Which brings us to the never-ending and always tricky question of what to do next. The least invasive way to find out what it is is to do an MRI. Unfortunately, Austin can’t have an MRI with a GFR under 30, nor can he have a CT scan with contrast. There’s a liver function test he could have but it would expose him to a lot of radiation, something we maxed out long ago. Then there’s the possibility of accessing it with a needle biopsy, which comes with all sorts of risks of its own.

When I discussed these options with Austin’s oncologist yesterday afternoon, we still hadn’t done the chest CT (which involves no contrast allowing Austin to still get it). Our first order of business was to make sure there were no suspicious spots or blobs in his lungs. If there were, that would be a huge sign that cancer had indeed spread. Well, luckily, I learned by 6pm that his chest CT was clear. That put us at greater ease about the liver because when Wilms spreads it usually appears first in one lung, then the other lung and only finally in the liver.

Ultimately, our oncologist recommended that we simply wait and re-image in another month. There are a whole bunch of reasons this option makes the most sense: One, it’s probably nothing. Two, all the methods of determining what it is pose risks to Austin. Three, if it actually is Wilms that’s spread to the liver, there’s not much we can do about it. Really, that’s the kicker right there. I mean, in a sick kind of way, what’s the point of us having that information? What am I gonna do with it? I suppose I could pull the kids out of school and make sure they see all the beautiful places of the world. I could take Austin to Disney World for his 4th birthday. I could work extra hard to ensure each day had more laughter than tears.

But I do all that already. I already take them swimming every time it’s hot or say yes to the after-dinner bike ride to the duck pond or park. I’m already thinking about taking him to Disney World for his 4th birthday. I already work extra hard to outweigh the daily scowls with smiles. Life seems short and fragile enough, no matter what a needle biopsy says.

As I was on the phone going over all this with the oncologist, he said that they just got a new computer system that generates data in a different way. As he was scrolling through Austin’s record, he could see a graph that showed that Austin has been treated for cancer in thirty-three out of the past thirty-six months. This struck him and, while it didn’t make his decision for him, it did make him wonder about how much he can do for a patient versus how much he can do to a patient.

Mark and I have learned, in these three long years, and Austin’s doctor has learned too, to make decisions for Austin. And I don’t mean to make them on his behalf. I mean to make them for his own good.

No, I’m not talking about LeBron James (again). And I’m not talking about whether or not we should build our own treehouse. I’m talking about our big decision. The decision. And we’ve made it.

Mark and I both feel comfortable leaving Austin’s kidney in until we have a real reason to take it out. We will continue to do abdominal ultrasounds once a month to watch for potential growth. And if anything shows up, we will obviously remove that kidney without hesitation. But it simply does not seem right to us to do something that will cause such immediate and long-lasting harm if we don’t absolutely have to.

Without doubt, we’ve given this great and careful consideration. We have the backing of Austin’s doctors, who have promised that if they believed we were doing something dangerous or too risky, they would intervene.  We know that, in addition to the obvious risk of cancer returning, there is also the possibility that the kidney will simply fail on its own before April 2012 (when Austin will finally be eligible for transplant). And of course, if that happens, we will remove the kidney without hesitation and start dialysis. In fact, we expect that. We’d both be surprised (and thrilled) if his kidney lasted for the next twenty months.  And if it doesn’t, well, yeah, we’ll be devastated but at least we’ll know that we’re doing these awful things because we have to.

The research and facts had us split down the middle so we relied heavily on our gut instincts to help solidify this decision. One key moment was imagining myself during the actual kidney-removing surgery.  I have paced those hospital hallways many a time while my child was laying on a sterile operating table with strangers in face masks opening up his small body. Six-hour, eight-hour, even ten-hour separations while Mark and I were filled with fear and anxiety. But every single time, I knew it had to be done. Not one of those surgeries was an option. For some of them, I was even excited: Go on, get that obscenely enormous tumor out of him. Or Come on now, good or bad, find us some solid information so we know what to do next.

But this? For this, I imagine myself second-guessing, triple-guessing, our decision every step of the way. I imagine myself at that moment of no return, racing back down the hallway and bursting through the doors through which no parent is welcome and insisting they stop. Stop, stop, you can’t do this to my child!

That is no way to think.

And then I imagine being at home the night before, climbing into bed with my boys and telling Austin what was set to take place the following day. How on earth could we explain such a decision to our happy, healthy, normal child? A boy who, despite all the extraordinary things he’s been through, still has completely ordinary expectations: He will go to school and have playdates, he’ll swim and learn to ride a bike, his body will function like everyone else’s. How could we look into his big brown eyes, again bordered by long dark lashes, and say, “Well, honey, this just seems like the right time to remove a part of you that you absolutely require in order to live a good life?”

No, no, that’s just not right. We will do what we have to do when we have to do it. And not one moment sooner.

Interestingly, Austin’s creatinine (one of the key kidney numbers we wait for each week when we get his labs done) has been slowly going down. Which is good. It means that his kidney function is, if not returning to normal, at least improving.

Of course, for us, this makes any future decision even more difficult. I mean, it’s considerably easier to justify removing a kidney that looks bound to fail, that’s hanging on by a mere thread and about to die off on its own anyway. It’s another story altogether to take out an organ that seems to be doing just fine — or, in Austin’s case, fine enough.

It’s not a huge jump or anything, and is still in the too-high range, but much closer to normal than it was three weeks ago, or than it’s been for the past few months. This is no guarantee of anything so we’ll just watch and see if this trend continues. His potassium and phosphorous levels have also been “great” (doctor’s words) which means that we are doing a good (enough) job with his diet. That comes as huge relief to me as the primary feeder of my children since this diet has been nothing but a source of stress and frustration.

But other than that, we are simply enjoying our summer: hanging out with friends, swimming — at least daily, if not twice daily — in the pool, picking mulberries from a tree at Braedan’s school and making them into waffles and pancakes. Although we certainly think about Austin’s kidney and although I certainly write about it, we are content not making any decision for a while.  Someone asked the other day what would finally change, how we would go from our current wavering to a steadfast choice. Mark’s reply was that it’s simply a matter of time. Now is not the time for making that decision. Now is the time for resting and relaxing and recovering. When the time for the decision comes, we’ll just make it.

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