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A little piece of “news” that may have gotten lost during our vacation: Austin’s treehouse and the generous team of builders who made it happen were featured in The Real Estate section of the Cleveland Plain Dealer on Sunday, January 2. Interestingly, we had no idea it was going to be published until Mark’s mom called that morning.

Mark got up and started flipping through the piles and even opened up the Real Estate section while I, from across the kitchen, glanced up and said, “Wait. Is that Austin’s treehouse on the cover?”

And indeed it was. A lovely picture of the four of us in front of the treehouse and a great article about all the people who made it a reality. I now have a full list of the companies and professionals who donated their time and materials and can get busy writing some Thank You notes!

The second page of the article includes “Austin’s story as written by his mother Krissy,” which is, well, true. It was taken from an email I sent to some of those involved in the project who had asked for “Austin’s background.” It’s fine and accurate and all that, but I sort of wish I’d have known it was going to be in the Sunday edition of Cleveland’s major newspaper so I could’ve brought my A-game!

 

Wow, we thought we had a snow storm last week?

To help you imagine long lazy summer days with the sound of squealing children wafting through the neighborhood air, here’s an article that was written about Austin and his treehouse for the December edition of the Heights Observer.

Too bad the treehouse is buried right now . . .

Finally, after many weeks of checking the Cure website, they have released the Fall issue of their magazine, complete with my essay. And I’m much happier with this one!  Remember the debacle with the Diabetes Forecast article and how they managed to so thoroughly erase my voice with their edits? Well, this one is much better.  I still (of course) like my original essay better than the one that is printed but the differences are minor and the overall impact is the same.

Here is the version I submitted, which you’ll be shocked to know was too long (who, me??). But I am always amazed at how the inclusion (or omission) of just five or six words can have such a significant effect on a piece of writing.  You be the judge.

I Laughed

I laughed. I know that sounds outrageous, but it’s what came out. I leaned my head back until it hit the wall behind me and let out a strange chuckle. It wasn’t that I didn’t get it. I got it. But there wasn’t anything else I could do at that moment. Scream in anguish? Cry out in despair? Rage against the doctors sitting before me calmly delivering this horrific news?

No, Austin was asleep on my chest. The least I could do was let him keep sleeping. He was peaceful, at that moment. No one was hurting him, at that moment. He didn’t know how bad it had gotten. So I put my head back and laughed.

*  *  *

It had been five weeks since the storm that is pediatric cancer took over our lives. Five weeks since six cancerous tumors were found on the kidneys of our ten-month-old son Austin. Five weeks since we’d learned the new terminology, developed new routines, allowed a new definition of normal to settle over our lives.

And we were doing well. We made it through his first surgery and eleven days in the hospital, we’d started weekly chemotherapy, that kicked-in-the-stomach feeling we got each time we remembered our child had cancer was fading. We were still standing and we were as optimistic as ever.

And then, things changed. The primary tumor that was supposed to be getting smaller, withering under the evil magic cast by chemo, fought back instead. I suddenly found myself measuring Austin’s abdominal circumference—literally wrapping a ribbon around his belly and holding it up to a yardstick. Fifty centimeters around on Sunday. Fifty-one on Monday. By Tuesday, he was admitted to the hospital for yet another CT scan.

And on late Wednesday afternoon, a parade of doctors marched into our room. You know you’re in trouble when it takes six people to break the news. Mark and I were seated, Austin asleep against my chest, everyone else standing. We breathed, we looked at each other. We were ready, give us the news.

We were not ready, not for this news. The tumor on the right had grown, big-time. What we already thought was huge at seven-by-seven-by-fourteen centimeters was suddenly, shockingly, fifteen-by-ten-by-twenty-one centimeters. Why did I never learn the metric system? Oh god, it grew by fifty percent, fifty percent. They told us this with straight faces. They shared what they’d seen on the scan, what the plan is, what we might learn next, but they betrayed no emotion. Finally, they asked if we have any questions. Questions? Yes, we have a few, like why did this happen and what about the chemo and why didn’t anyone notice and is he going to live? That’s the question, the only real question: Is Austin going to live?

But there were no answers. We faced the very real possibility that Austin’s cancer was much worse than we’d first thought. That something rare and unexpected, something scary and deadly, was happening inside his little body. We now expected a different pathology, not so favorable.

Everything shifted. All over again, everything changed. Suddenly treatment options I had so wanted to avoid, like radiation, seemed acceptable. Roads I had never wanted to go down, like kidney failure, seemed almost bearable. Nothing was off the table anymore. There was only one scenario, one outcome, that I could not, would not, accept.

* * *

The tumor and the kidney it devoured came out three days later, removed in a five-hour-long surgery. A six-pound weight lifted off our shoulders, out of his small body, one tiny step in the right direction. But we waited for the news that mattered: the pathology results that would define the rest of Austin’s cancer treatment. The pathology results that could define the rest of our lives.  

Six long days later, our oncologist showed up, five hours earlier than we expected him. And he was bouncing, literally bouncing like a kid with a secret, incapable of containing this news. This glorious glorious news. Austin was fine. The skinny baby boy lying in my arms with an eight-inch scar across his belly, with tubes in his nose, chest, hands, feet, with five tumors still growing on his only remaining kidney . . . this boy would be fine. The pathology was still favorable. The tumor grew for other strange and rare reasons, a seldom-seen variation with a seldom-heard name.

But this cancer was still treatable, still beatable. Austin would live.

I held my baby to my chest and we spun around the room, dancing, crying. Then, imagining the sun in the sky outside these hospital walls, I leaned my head back with my face toward the ceiling and I laughed.

I laughed.

Remember I told you many months ago that I had an article coming out in Caring Today? This is a magazine targeted to caregivers that is distributed largely through hospitals and doctors’ offices (might be hard to find while you’re waiting in line at the grocery store . . . ).

It was actually my first accepted essay and it was supposed to come out in the summer issue, expected in June. I’d already been paid for it, deposited my check and everything, but nothing happened. I hadn’t heard from them in months, there were no updates on their website, I was actually beginning to think that maybe they’d gone out of business! (Boy, that wouldn’t be a good sign, now would it . . . a bit of a curse on my publishing career?)

Well, last week the editor called and left me a message apologizing that she hadn’t been able to use my piece in their last issue but hoping to include it in the fall issue, but she wanted to first check in and see how Austin was.  Now her message wasn’t that simple. You see, the last communication we’d had was in late March when I sent her a brief message informing her that Austin’s cancer had recurred (as we then thought). She replied back with shock and sadness, sending heartfelt wishes our way. But that was the last she knew. So here’s this poor woman, leaving me what’s essentially a business voicemail inquiring about my son, whom she had every reason to believe was either in treatment or dying. Oh, you should have heard her. It was almost funny, only because he is neither in treatment or dying, to hear her hem and haw and try to delicately ask a question that might well have had the worst possible answer.

I called her back as quickly as I could to put her out of her misery with my best short-version answer of why it wasn’t actually a recurrence and how totally fine Austin now is. Needless to say, she was very pleased and we then talked the business of publishing.

She’s happy to not have to include such depressing news in my tagline, I’m happy to even get a tagline, it’s a win-win.

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