You are currently browsing the monthly archive for August 2011.

I’ve always loved the beginning of a new school year. The cooling down of summer signaling the start of my favorite season (which seems to have started a month ago in these parts), the excitement of the first day back to school — finding out who your teacher is (I don’t remember ever receiving that information in advance like our kids do now), seeing old friends, making new friends. My next door neighbor Jenny and I would plan our matching first day outfits well in advance of Labor Day, making sure we looked perfectly twin-like in an effort to further confuse our schoolmates.

And then as I got older, it was field hockey season and Friday night football games, when schoolwork still seemed fresh and classes still interesting. There was a what’s-gonna-happen-this-year sense in the air, a hint of possibility pervading everything you did.

And now tomorrow, my big boy Braedan will finally head off to second grade (his district has managed to schedule the latest start date of any in the city, dragging on the endless fighting between two unnamed brothers who have spent waaaaaayyyyy too much time together lately). I am super excited, Braedan slightly more subdued about the whole thing. He has a fantastic teacher and I think this will prove to be an exciting and engaging year for him.

While Braedan heads off to school, Austin and I will kick off Childhood Cancer Awareness Month by going to the hospital for a day full of labs (blood counts and renal function), abdominal ultrasound (to check his kidney and liver), chest CT (to look for possible metastasis to the lungs), ECHO (to check 1) the size of a heart already enlarged due to years of high blood pressure and 2) possible damage caused to said heart by chemo) and a visit to the oncologist. I plan to have all that completed in time to pick up Braedan at 3:15 (luckily, my mom is on standby to relieve me at the hospital if things take longer than expected, which we really should expect by now).

We’ve packed it in over the past two weeks with a last minute mid-week visit to Chautauqua, where we hiked through the stunning Panama Rocks:

A trip to the zoo yesterday (post-crowds since most schools were alreday back in session):

Wait, what’s this? An actual image of the two boys not hurling
insults or toys or punches at one another?
Thank god I captured it for posterity!

And today, we had our requisite end-of-summer trip downtown for lunch with Daddy, which always requires dressing “like a lawyer” (the ties didn’t last through lunch like last year):

Now the backpack is packed, lunch is ready, clothes are clean. Time for a bath and early to bed. And a new year begins ….

I received a completely unexpected rejection yesterday from an agent. Not that I had expected her to request my full manuscript, but I hadn’t expected to hear from her at all.  She’s the one I wrote about many months ago who I’d met at the Pitch Slam in January and then queried, and then followed up with in March (after the requisite two month wait) and then never ever heard from. So I assumed I never would.

Suddenly yesterday an email from her appears in my inbox. I was so surprised I thought maybe I’d pushed some funny button on my phone and pulled up old email files form the dark recesses of digital storage. But no, it was dated August 24 and she began by saying what a pleasure it was to meet me at the conference (although I’m certain she has little recollection of me at all). She then apologized for how long it’s taken her to get to all these submissions and acknowledged that I’d probably written her off, but “for what it’s worth, I think you have a very interesting project and an important story to tell. I also found that your prose conveys true emotion and that you handle a difficult subject with a deft hand.”

Okay, okay, this sounds good. Tell me more. And then the word: “Unfortunately …” It’s like those moments on The Bachelor when they say to some puppy-eyed prospect, “You’re everything I’ve ever wanted in a partner: funny and smart and good-looking. I knew from the moment I laid eyes on you that I might fall in love … BUT ….”

So, my “unfortunately” was that the narrative did not pick up quickly enough for her to have the necessary enthusiasm to represent my book.

Well, I have to say, this is a really good rejection for a few reasons: One, I didn’t expect to hear from her at all so it’s not like I was holding out some last great hope. And two, this is the very first time I’ve received any constructive criticism. I’ve had agents reject me in completely generic terms or I’ve had them praise me and my writing only to blame the market or their own inexperience for not being able to sell my work (a twist on the classic, “It’s not you, it’s me” line). But now, finally, I have an actual reason, something I can do to make it better.

And it’s the very reason I’ve been wondering about lately.  In fact, just last week, I dragged my book out of those dark recesses of digital storage and added a brand new first page, something I’d been loathe to do before. I knew the beginning didn’t fully capture my best writing but I’d been so stuck on how to change it. I still don’t have the perfect answer for how to do it but at least I have an impetus to do so and a clear goal — move the narrative along faster.

Now I just have to hope the one other agent I’m still holding out hope for doesn’t think the same thing!

For your viewing pleasure, here are the latest pictures of the boys’ treehouse.

From the outside:

Still painting the trim on this side (my ladder’s not tall enough)

And the inside:

The “thinking chairs” (and look, a great place to hang all the artwork!)

Another nook (not like they’ve ever sat still in there or anything)

And of course, no treehouse would be complete without wishing stars hanging from the ceiling.

OK, that’s all I have for you this evening. Now back to your regularly scheduled programming ….

I had an opportunity over the weekend to give a speech on behalf of Jeremy Cares, an organization that provides gifts to families who are in-patient over the holidays — like theirs once was and like ours almost was.

My talk can be viewed here.  It’s fairly long and a bit fuzzy at times, but I think you’ll enjoy it. I got a lot of positive feedback afterward and even a standing ovation when I announced just how fine Austin is now. I do wish I had pulled my hair back though since it keeps getting in my way and I also should have put down the five sheets of “speech” I’d brought with me, only to end up speaking from memory since there was no podium.  But now that I’ve pointed out all the flaws, take a look. (The video is located on Facebook right now, so let me know if you’ve yet to venture into that world and are unable to see it.) Note: Now it’s a few hours later and I was told by many that the video was “unavailable” so try the link above, it should now take you to another site and you should be able to view it.

Here also is the clip of Jeremy George’s family last week on Good Company, our local morning show, describing how their organization came to be.

Austin had an appointment with his nephrologist today. That’s the kidney doctor for those of you not in the know. While we don’t have any official results from his labs yet, she did say that his estimated GFR is now about 60. If you remember back to last spring when we were trying to decide whether or not to continue chemo, our dilemma was driven in large part by an abysmal GFR of 27. Anything below 30 makes a patient eligible for dialysis and a GFR below 15 indicates that it’s time for transplant.

So, while 60 certainly isn’t normal, it’s pretty darn good.  In terms of predicting what’s still to come … well, that’s a dangerous game for anyone and an extremely inaccurate one when it comes to Austin, who sits all alone is his own little category of patients (or patient, singular, since he’s the only one with quite his history of procedures and risk factors). But she did say that this little kidney could last and last … three more years, five more years, ten more years.

We are back where we were the first time Austin finished cancer treatment, when we assumed his kidney would keep chugging along until puberty when rapid growth and muscle development would put such stress on the little organ that it would stop working and finally need to be replaced. That scenario was thrown completely out the window during his relapse, as the kidney seemed to plunge deeper and deeper into distress, caused by the relentless onslaught of surgery, radiation and chemo. A year ago, we were hoping for a kidney that would work for weeks and months, not years and years.

Funny how life’s victories and traumas are all of a relative nature. If I’d had a perfectly healthy son who suddenly experienced kidney failure and needed a transplant at age 15, I’d be devastated.  But for us, considering where we’ve been and all we’ve had to endure and all we’ve almost had to endure, kidney failure in adolescence seems like quite a luxury. Quite a luxury indeed.

Yesterday was an anniversary I will never manage to overlook: nine years since I married someone who is pretty much the best guy in the universe.

Over the weekend at my reunion, I spoke with a couple different people who made comments like, “I don’t know how you did what you were able to do,” or “I never would have had the strength to handle childhood cancer like that.” I’ve heard these things before, since the very beginning of our journey four years ago. And I have continually insisted that I don’t believe them. I think that most of us have a well of strength deep within that rises to the top only when needed.  None of us walks around with our full force on display, in an I-can-handle-anything-that’s-thrown-at-me kind of way. But we step up when needed, taking the worst of life and making it through. Because we have no other choice.

But I will admit that I do have something unique, one extra benefit that made handling such a massive trauma many times easier. And that is Mark. Having a steady partner by my side, one who never kept score (how many hours have I spent at the hospital versus how many hours have you), one who reminded me, without judgment, to focus on Braedan when necessary, one who was quietly realistic, forcing me to look at ugly truths while holding an acceptable amount of hope at the same time, … it made all the difference. There is no way I could have done this without him. And I’m not just saying there’s no way I could have done this alone; that’s obvious. But Mark is not interchangeable with any other good-enough husband. There is no way I could have done this without Mark.

Of all the strength I showed, and continue to show as the public face of Austin’s sickness, only half is mine. The other half was handed to me by the man I love most.

Happy nine years, honey. May the next nine be a heck of a lot easier.

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.

August 2011


August 2011