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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.

A brief diversion from my kindergarten quandary (which I will take up again shortly) to point out that there was a Letter to the Editor in yesterday’s Plain Dealer written by Austin’s oncologist, Dr. Jeff Auletta. He wrote in response to this recent article about a high school dance organized to support St. Jude Children’s Research Hospital.  Now I obviously think supporting St Jude’s and any other cancer organization is worthy, but I agree with Jeff that there are just as many sick children right here at home who are equally deserving of the community’s dollars.

It’s all sort of ironic because just yesterday Austin’s preschool held its annual Trike-a-Thon to raise money for St. Jude’s. I’ve always been very pleased that the school does this, even before childhood cancer became an integral part of our lives, but now it seems sort of silly — why not create an event to raise money for the kids at Rainbow or the Cleveland Clinic?  Why send it all to Memphis when it can do just as much good here in our own backyard?

Thank you for the many thoughtful comments. A few responses:

I have certainly talked this over with his preschool teacher, but that has still left me hovering between my two choices. She thinks that he is ready both academically and socially for kindergarten. Her concern is the much less predictable “What about when he’s 10 or 12 or 16?” I know he’d be fine academically, at least in the early grades (after that, how can any of us predict?). He’s very bright and, because of watching Breadan master reading, has excellent pre-literacy skills.

His social interactions are another matter entirely. How he acts around others when I’m present is drastically different from how he acts when I’m not present. If I’m there, he’s mommy’s little baby, wanting to be held and hanging on to me as I leave. On the days that I parent help, he refuses to talk to anyone, teacher or classmates. But when he’s on his own, without me, he’s just a normal little kid. Somewhat on the quiet side but he definitely has friends and participates in the group activities in an acceptable way.

So, in that regard, I almost think it would be good for him to start school on time (note I did not say “early,” because next year would not be early) because it would allow him to be his “big” self more often. I wouldn’t be around as much and he wouldn’t sink back into me. But of course (flipside), if he really needs that babying time from me, then there’s no reason I shouldn’t give it to him for as long as I can.

My dad said just yesterday, “Give this child every advantage you possibly can, he deserves it.” And there’s no doubt that if I really believed he would suffer by being the youngest, I would hold him back. But I don’t really believe that he’ll suffer — although I know he might suffer — hence my dilemma.

Mark also thinks we should wait. “Why not?” is his reason. And I do actually have an answer for that. In our district, there is an enormous acheivement gap between the lower income students and the higher income students, one that exists prior to school ever starting. Nearly half of the children in Braedan’s school qualify for free or reduced lunch based on national poverty standards. For those families, you send your child as soon as they’re able, late birthday or not. And I don’t mean to imply that these families use school as free, all-day childcare. But it IS free, all-day, high-quality education and why would they not take advantage of that as soon as possible? Austin will start school with many advantages over (some of) his classmates: he’s been read to every day of his life, he’s been exposed to a great many things, ideas and places, he attends a high quality preschool. I’m not entirely comfortable adding yet another advantage on top of that: an extra year of physical and emotional development. Not that I want to “dumb it down,” but it just seems to create unnecessary inequality.

Now many people have said to me that I shouldn’t sacrifice my own child for the sake of the common good. And again, I wouldn’t do it if I believed he was being sacrificed. But I also think that if everyone puts their own personal interests ahead of the common good, then there is no common good!

Hmmmmm, all this being said, I’ve already registered him in the pre-K class at his preschool for next year. And I will also register him for kindergarten next month, just to give us a little more time to decide. He is not much help in the matter — he claims he wants to go when one particular friend, seven months his senior, goes. But that friend’s parents have yet to decide whether he’ll attend our local public school or another parochial school where they attend church, so that certainly shouldn’t be our deciding factor.

And in terms of Austin’s health, there are reasons that go both ways there too. Obviously, if he were to be on dialysis in this next year, I’d keep him preschool so he could do that in the morning and head to the hospital in the afternoon. No point in enrolling him in kindergarten just to pull him out three days a week. But that doesn’t seem to be a pressing issue right now and hopefully won’t become one (knock on wood). We still expect that he’ll need a transplant at some point in the future but most parents schedule those over summer break (really, like instead of two weeks at camp). And if he’s older, he can easily see a hospital tutor to keep him on grade level. So I can’t make a decision based on such unknowns.

And then there’s my personal motivation, which in truth is only a tiny little piece of this. I remember with incredible clarity sitting in the hospital cafeteria with Mark, picking at my breakfast, two weeks before Austin’s first birthday, while he was beginning an eight-hour surgery. And Mark said to me, as gently as he possibly could, in an effort to prepare me for what might lie ahead (not that you can ever be prepared for such a thing), “Honey, you have to wrap your head around the idea that this child will probably not make it to kindergarten.”

I will not rush it for that reason, I promise, but come hell or high water, this child is making it to kindergarten.

You know, it’s sort of funny because last spring and summer when we were dealing with the enormous burden of deciding whether or not to remove Austin’s kidney — and even back into the previous fall and winter when we were dealing with the same enormous burden — I kept saying how I wished I only had “normal” parenting decisions to make. Normal, average everyday dilemmas to mull.

Well, now I have one and you know it’s stressing me out! Ha, be careful what you wish for, right?

Austin will turn five on September 21. Our school district’s deadline for enrolling children in kindergarten is September 30. My natural inclination is to send him when it’s officially his time, which this coming fall would be. I definitely don’t believe in holding him back for any personal gain — so he’ll be bigger or stronger or smarter than his classmates. That’s just not my perogative as a parent — I lean much more towards that happy middle ground for my kids.

So there’s a big part of me that wants to send him, because I feel it’s the “right” thing to do. But, I do worry that it could add an unnecessary strain to his schooling years.  He would always always be the youngest and might always feel like he was playing catch-up. Because so many other parents are holding their kids back these days — not just those with September birthdays, but with birthdays as far back as June and July — Austin could be as many as fifteen months younger than his classmates. That’s a really big difference, especially when you’re only four and your classmates are already six.

So I find myself super torn, back and forth, back and forth  (just like with that other big decision). It wouldn’t be hard to wait — Austin has another year of preschool he can easily do since he’s not enrolled in the pre-K class this year, so that’s not a factor.

I’m certainly not expecting anyone else to make this decision for us, but would love to hear about your experiences either as parents or as teachers or as the youngest or oldest student you may once have been.  Any insight is welcome.

And believe me, I know that if this is my biggest parenting concern right now, I am very lucky indeed.

It’s that time of year again … head-shaving time!

Team Austin is once again registered for this year’s St. Baldrick’s events and currently has three members:

Four-time shavee and proud father Mark, two-time shavee and proud brother Braedan …

and … introducing … first-time shavee and proud survivor AUSTIN.

Yes, that’s right, the little guy has asked to join his dad and brother at this year’s event. Not totally sure how I feel about that (we had to work pretty hard to get a headful of hair back on this boy), but they’re all plenty excited.

Mark will be shaving at the adult event on St. Patrick’s Day at AJ Rocco’s downtown following the parade. The boys will shave the following Sunday, March 20, at the Chagrin Falls Township Hall at the more family-friendly event (where they serve cookies and juice instead of green beer). Please consider joining us, either as team members or at least as cheerleaders, on one or both of those days.  Both events are moving and lots of fun (albeit in different ways).

And maybe your kids would like to join the team this year? There’s no minimum amount to raise and I think it would be more about the statement they’d be making than the dollars they’d be raising. Although the fabulous St Baldrick’s did raise a whooping $22 million last year for pediatric cancer research.

I’ve explained to my boys that they probably won’t raise as much this year as they did last ($4,460 for Braedan and more than $18,000 for Team Austin) for a few reasons: 1) Austin is no longer in treatment and the sense of urgency that existed last year has (thankfully) diminished. And 2) all their donations this year will have to be divided in half.  Yes, divided in half. Please pay attention, you potential donors: Please please please, I beg of you, if you give any amount to one child please give the exact same amount to the other. I don’t care if it’s tiny little bits, five bucks for one kid and five for the other, but just please keep it as even as possible. Braedan was super proud of himself last year for being the top fundraiser on Team Austin and the top fundraiser at the family event, and he’s old enough now to read the lists of donors and amounts on the website, and trust me, he will be keeping score.  I thank you in advance for helping me maintain some sense of peace in our household.

Here are their pages for all you generous souls: Mark here, Braedan here and Austin here (they’re all currently listed at the AJ Rocco’s event but I’ll move the little people once the other one is registered).

So, six weeks from now, my little Austin will be bald for the third time in his short life. But this time, for only good reasons.

No, not “Finally, I heard from some fabulous literary agent in New York and she said my work is fabulous and she really wants to read my full (and fabulous) manuscript.”

But yes, finally (finally!), we have sold our house on Edgehill. It is currently under contract, all papers having been officially signed today. (Donna, I wasn’t ignoring your question a week ago, but didn’t want to jinx myself.)

A huge relief, to say the least. The constant maintenance of two houses has been a bit much for us (I mean, for Mark). It’s been a long time coming, made especially obvious by last week’s one-year anniversary of our move to this house. We got a price that we’re happy with (although if you had named this particular price a year ago, we would have laughed in your faces, but, hey, it’s all relative).

So, now we just need to hold the official inspection and then move our remaining stuff (ie, junk) out of the garage and basement and hand over the keys.


I just finished my book. Done, complete, including part three, the relapse.

And I love it.

I cannot wait to someday to sign your copies and have all of you, who have followed along so faithfully over the years — through the good, bad and ugly (and man, was it ugly) — actually sit down with my book in your hands and read it.

So now I sit back and wait to hear from the five agents who are reading the first pages. I could hear today or tomorrow or not for another month.

But no matter what, even if none of them want to sell it, it will become a book and you will get the chance to read it.

May seems an awful long ways away right now, as I look out at this winter wonderland, layer upon layer of snow and ice covering every visible surface. But May is the next time we’re scheduled to go to the hospital. Three months away!

Everything yesterday was fine. His chest CT was clear and the abdominal ultrasound showed no changes from the last time. His creatinine held steady at its new December low and his hemoglobin jumped up in a big way. The hemoglobin thing is pretty significant, here’s the medical scoop: Chemo obviously destroys blood cells and the body’s ability to produce new ones is often slower than a scheduled chemo regimen, leading to inevitable blood and platelet transfusions during treatment. Once chemo is stopped, the patient’s bone marrow should slowly but steadily produce new blood cells and “refill the coffers,” until they reach a normal level. This has  happened for Austin in terms of white blood cells and platelets and neutrophils but not for red blood cells, as measured by his hemoglobin.  We believed the reason for this was twofold: 1) the kidney produces something called erythropoetin which makes red blood cells, so we assumed his wasn’t doing that (or wasn’t doing it quickly enough) and 2) he was spilling red blood cells into his urine, again a sign of weakened kidney function.

So we’d been planning on blood transfusions well into the future, as often as he needed them, which last summer was every four to six weeks. Well, his last transfusion was in the end of August! In November and December, his hemoglobin was low but not quite low enough to necessitate a transfusion. And yesterday, it had risen by an entire point to a number that is two-tenths of a point away from normal!

That kidney is indeed recovering.

Even his blood pressure was down, always a huge relief. So we carry on, three more months with no hospital visits, three more months of health and growth and recovery. Working kidney, cancer-free … what more could we ask for?

Springtime would be nice!

Well, it’s been two months since Austin’s had labwork and nearly three since he’s had an ultrasound or CT scan, and that’s about as long a break as we can hope to get around here.

We are due at the hospital tomorrow, following Austin’s morning at school (assuming he has a morning at school — today was another wasted snow day, in my opinion, because I went out and ran five miles and it wasn’t bad at all). He’ll have bloodwork done to check his kidney function and his hemoglobin (among other things, but those are the numbers I pay attention to). Then an abdominal ultrasound to look at both the kidney and the liver, followed by a chest CT and then a follow-up visit with his oncologist.

As much as we have enjoyed this long break from all things medical, it does raise the stakes. The longer we go, the more nerve wracking the tests become. Three months is an awful long time to turn our heads and look the other way. Who knows what those sneaky little cancer cells could have done in three months’ time?

But he certainly doesn’t seem like a boy who has a single thing wrong with him. He’s happy and active and, at this moment, busy building an obstacle course for his Batman motorcycles to race through.

Should be fine.

February 2011


February 2011