You are currently browsing the tag archive for the ‘pediatric cancer’ tag.

OK, I will let the kindergarten discussion rest for a bit. But I do thank those of you who’ve shared your experiences with us. It has been extremely useful to hear about the decision you each made, how you reached that decision and what the consequences were.

But now, it’s time to focus on the most important — and much more fun — event of March (besides the much-awaited arrival of spring!): St. Baldrick’s!

Two weeks from today, Mark will be shaving his head at A.J. Rocco’s (816 Huron Rd) along with 92 other shavees, including more than a dozen women (better them than me, that’s for sure). If you’re able to get off work early or have someone to watch your kids, we’d love to have as many of you as possible join us that afternoon.  Shaving starts around 3, following the end of the parade.  Some children do attend that event, but it is definitely a crowded bar experience on a very drunken day, so plan accordingly.

The boys are shaving their heads the following Sunday, March 20 at the Greenville Inn in Chagrin Falls (7150 Pine St). They are scheduled at 3pm if you are able to come and cheer them on (this one is definitely more family-oriented). They are both excited and a little bit nervous, so friendly faces might help.

And, of course, it’s not too late to give. So far, you’ve all done a beautiful job of keeping Braedan and Austin‘s donations perfectly even (an extra thank you for that).  I know you’ve all been very generous in the past so I hate to make too hard a sell but I cannot say enough good things about the St. Baldrick’s Foundation. They give more money to pediatric cancer research than any other organization in the country besides the federal government. Research that is absolutely vital to saving the lives of our youngest patients and to helping them live those lives with the fewest long-term complications. Just think of how different his process would have been for us, so far and into the future, if Austin’s cancer had been the only thing we’d needed to worry about. More research is critical.

So, again, I thank you on behalf of all my soon-to-be bald boys. Oh, and by the way, who’s brave enough to join Team Austin???

Braedan handled Austin’s first bout with cancer beautifully.  He made it through the entire thing unscathed, as if it was just another thing you deal with when you have a little brother. He was remarkably happy, well-adjusted and trusting.

The second time? Not so much.

I’ve been hesitant to write about this because I felt some need to protect him, as if his current struggles are somehow his fault or should be hidden. But they’re not his fault and hiding them certainly doesn’t help.

He is angry and frustrated and anxious and fearful and contrary and argumentative and a little bit lost. Most of all, more than anything, he’s angry. Angry at me and Mark, angry at Austin, angry at the world. The start of school, which I’d been eagerly awaiting because he loved it so much last year, has only made things worse.

I understand where he’s coming from and I completely understand why it’s happening now. It’s classic post-traumatic stress. He worked so hard for so many months keeping it together, being good because we were exhausted, being nice to Austin because he was sick. But he’s not sick anymore and we’re not quite so exhausted anymore and it’s a safe time to let that rage out.  And let it out, he does.

Of course, understanding the source of his anger doesn’t make him any easier to live with! So we’ve made an appointment with the pediatric psychologist at Rainbow who works specifically with families, and especially siblings, of children with cancer. I’ve also spoken with his teacher and the social worker at his school, so I remain hopeful that we will find effective ways to work through this.

Cancer casts a long shadow, that I know, and the shadow can darken the lives of more people than just the patient.  More than anything, I want my children to be happy. And as hard as we worked to make Austin better, we will work to make Braedan better. It’s his turn.

The death of your child follows you everywhere you go, hovering in your blindspot. That’s how Lorrie Moore describes parenting a child with cancer in People Like That Are The Only People Here. In your blindspot: just out of reach, never in focus, but there.

So you move along, heading for that sacred destination (cure, survival) and on good days, you get into a groove, lulled into a feeling of comfort, of certainty even (certain that this child will be okay, this child will escape the worst fate). But then, for whatever reason, you reposition yourself and glance over your shoulder and there it is.

Just lingering, hovering. If you try to really look it in the face, try to grab it and shake it and tell it to leave you the hell alone, it would disappear. It’s unreachable, ungrabbable. But there.

Wilms’ tumor is one of the big success stories of pediatric cancer. But that’s because it’s relatively easy to beat the first time around. Once it makes it past that first round, once it survives the initial onslaught . . . well, then it’s not so easy to beat.

We don’t put much weight in survival statistics these days. Of course, there are no accurate numbers for a kid like Austin; he doesn’t fall neatly into any pre-existing category. When we pore over the research with his doctors, we inevitably say, “Well, he’s a little bit like this and a little bit like that,” and “Oh, this case looks like his except for (insert major event here).” So we really have no guidepost, no reliable map to follow.

But if we were forced to give a number, if we had to choose some random survival statistic, it would surely fall below the 50% mark. Which is partly why we don’t put much weight in survival statistics these days. Austin has always fallen outside of the range of normal. Since Day One, nothing about his cancer has been textbook. So we buck up and figure this won’t be textbook either; he’ll just continue beating the odds because that’s how he does it.

The treatment plan we’re following is a full-court press. We’re going whole hog, guns blazing, no holds barred, enter whatever metaphor you’d like to say we’re doing every damn thing we can. When I said in an earlier post that this plan “just might work,” I was wrong. It must work, it has to work.

It’s all we’ve got.

I got a message the other day forwarded from Betsy Kling that included an email she received from a viewer after we were on the news. It was from a woman who had Wilms’ tumor as a baby, diagnosed at 11 months just like Austin, who had just celebrated her 53rd cancer-free year! She was writing to say how her ears had perked up at the mention of Wilms’ tumor and how happy she was to see Austin looking so healthy and fine.

Now this woman had Wilms’ in just one kidney, as is the much more common and easier-to-treat type of this cancer. It is in fact referred to as the “pediatric cancer of choice” because it has such high survival rates (isn’t that just the most awful way to describe it . . . who on earth chooses pediatric cancer??). But Wilms’ tumor treatment has been a huge success for cancer researchers and doctors because treatment has gotten more and more effective. But, god, fifty-three years ago? I don’t imagine it was the cancer of choice fifty-three years ago! Surely they hadn’t yet managed to treat in a way that was either consistently successful or that would prevent the onset of future secondary cancers or diseases. So, really, this woman is a huge success story in and of herself.

And it sure is nice to hear about those who beat the odds. Especially when they’re mentioned in connection to my Austin!

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.

February 2020
M T W T F S S
« Jan    
 12
3456789
10111213141516
17181920212223
242526272829  

Archives

February 2020
M T W T F S S
« Jan    
 12
3456789
10111213141516
17181920212223
242526272829