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I apologize in advance if this one is disturbing for you, but I feel it’s a necessary part of our full story. On Austin’s birthday last week, Mark and I took a moment to look through the photo album that contained images from his first birthday, and to reflect for a minute on just how far we’ve come. As we flipped through a few months’ worth of photos, I realized that those of you who started reading after I launched this blog, but never read the CarePage, missed out on some of the most serious days — and most disturbing images — of his and our lives.
So, here they are, in all their gory (“L” purposefully omitted).
This first one was taken the morning of August 1, 2007, our third day in the hospital. You can see that his belly is a bit distended, but not alarmingly so. This was the last moment his skin was unmarked by scars, as he was preparing to go into his surgical biopsy which left him with two inch-long incisions on either side of his abdomen and a Broviac line in his chest:
Sleeping post-surgery with his mama. It was now confirmed that he did indeed have cancer:
And with Caryl. You can almost see one of the scars under his hand:
And with his Gram. Poor sad baby, he held on to that juice box for dear life:
But after eleven days, we went home and he started to get back to normal. The Broviac line under his shirt is what causes all that lumpiness:
And then things began to change. When he was supposed to be getting better, he instead got worse. Over Labor Day weekend, right after a blast of three chemo drugs, his belly just kept growing. Growing and growing, bigger every day. I literally tied a piece of ribbon around it and measured it on Saturday. It was one centimeter bigger on Sunday. And another on Monday. And by Tuesday, we were back in the hospital:
The next day we learned the truth: the tumor, which at diagnosis was 7 by 7 by 14 centimeters, was now 10 by 15 by 21.
And yet he still tried to smile:
But it wasn’t easy:
And then there are these next ones. Taken on Friday, September 7, 2007, two weeks before Austin’s first birthday and mere minutes before we brought him to the pre-op room for a six-hour surgery that would remove his right kidney and a five-and-a-half pound tumor:
I know, I know. I was there. I saw these images with my own eyes. In my own child. So believe me, I know how bad they are:
And hours and hours later, he was returned to us, nearly six pounds lighter:
And so he was lighter and, we hoped, healthier:
But it was six days before we knew why it had grown so horrifically and a full ten days before he was allowed to eat again. Ten days with no milk, no food, no water, except for the few ice chips I sneaked him one day (which he promptly threw up):
He was a mere shell of the boy I once knew:
Those were the worst days for me. Of my life, I think. But he still managed to smile:
Finally, we got to go home, for five days, where we celebrated his first birthday:
And when those five days were up, we were right back in the hospital, getting ready for another surgery. But this time, Austin’s belly was fat from all that cake:
I know these are sad and I know they’re shocking. But I’m okay with looking at them. In a way, I think it’s good: we should never forget. But that was then.
And this is now:
And we are the luckiest.
If, by any chance, you’ve been waiting around for some news from today’s scans, well . . . imagine how we feel.
But we do finally have news and it’s mostly good. The “good” part is that it has not spread; there is no cancer in Austin’s lungs or liver. The “mostly” part is that the mass seems to have grown yet again (from two centimeters in diameter to almost three), although it’s unclear whether the size has actually changed or whether the view on a 3-dimensional CT scan is just different enough from a 2-dimensional ultrasound that it looks bigger. Ultimately (as I have been heartily assured by our docs) this doesn’t change our approach on Monday, and in fact it lets us know (yet again) that we are doing the right thing by moving ahead with this as quickly as we are.
Here’s the interesting thing though. The cystic lesion (the very thing we were watching via ultrasound when we found the current new solid lesion) seems to have been pushed out of place by the new lesion. They look like they’ve merged into one which might be why it’s now bigger. The doctors won’t be able to tell for sure until they actually open him up and are looking at these tumors head-on but it’s possible the solid one either grew inside the fluid one and burst out of it or maybe they’ve just been smooshed together.
All of this made me very nervous when I heard it (Wait, it’s moved, why would it do such a thing? Oh no, now it’s bigger — can we still spare the kidney? etc etc) but according to the surgeon, the plan remains. He even said that being slightly bigger is actually better because he’ll be better able to see it and manipulate it with his hands. Its increased size doesn’t necessarily mean they’ll have to remove any more of the kidney. Imagine that you made a pile of sand (the kidney tissue) and then stuck a small fist (tumor) in it, displacing the sand. If you stuck a larger fist (larger tumor) in it, and then eventually pulled it out, the sand that remained would be the same. That’s the hope with the kidney. They’ll be removing something that isn’t actually part of the kidney, hopefully leaving just as much kidney behind as they would have two weeks ago.
Anyway, I know that’s all a bunch of medical mumbo jumbo. Just know that my little man did a spectacular job in the hospital last night (without letting out even a peep when his IV was inserted) and all day today. He and Mark are still there, with hydration is set to be done by 9pm and then he’ll be home to sleep in his own bed.
Oh, but first (because the day hasn’t been long enough), I have to bundle Braedan up in his warmest pajamas and drag him out in 18-degree weather well past his bedtime on a school night to drive back down to the hospital and hand deliver Mark’s car keys, which, as we switched back and forth between each other’s cars during our multiple shifts on and off today, somehow ended up here at home while his car is there in the parking garage. Nice.
On this day, I know every one of us thinks back to where we were on that morning eight years ago; what we were doing, how we learned the news, who we called first. Everyone has their 9/11 story, just like everyone of older generations has their Pearl Harbor story or their JFK assassination story. But I always think, as we mark this day anew with each passing year, about the other meanings of this date. Lots and lots of things have happened on September 11’s, good things and bad things, big things and little things. People have gotten married, people –several that I know — celebrate their birthdays, people have died in ways completely unrelated to terrorist attacks.
We have our own September 11 story, one very different from the national story. It starts on Tuesday, September 4, 2007, the day I called the oncology department to tell them that I thought that maybe, just maybe, could it possible that Austin’s tumor was growing. We had just been in the out-patient clinic the Friday before, his doctors had all looked at his belly during a super long day of chemo. But over the weekend, it seemed to be magically growing, something I didn’t really believe was possible (he had four weeks worth of chemo pumping through his small body after all), something I didn’t want to believe could be possible. But by that Tuesday, it was hard to deny any longer, so I called and brought him in and they all looked and asked questions and quietly consulted with each other in the hallway before admitting us to the in-patient floor.
The next morning, Austin had another CT scan and then there was that moment. A moment I’ve described in many previous writings because, well, because it was a pretty significant moment. In they marched, six of them — oncologists, surgeons, nurses — to break the news that Austin’s tumor was indeed growing; in fact, it had grown by a whooping 50% and was now the outrageous and hard to fathom size of a butternut squash.
That was September 5. Not a very good day. Then Friday September 7, the tumor and the right kidney were removed. That was a good day, a day we breathed deeply and allowed ourselves to rest for a brief moment. But the news we needed, the pathology results that would explain why the tumor had grown so terrifyingly quickly, and that would determine the rest of Austin’s cancer treatment and that might determine the rest of our lives, wouldn’t come back until the following Tuesday.
I do not have the writing skills to begin to describe how excruciatingly slowly each second ticks by when you are waiting to hear whether your child will live or die. Those six days, between when we learned of the growth on September 5 and when the results were finally returned to us on September 11, were definitely the longest and most stressful days of our lives. We just needed to know. Good or bad — and we fully expected bad because that was the more reasonable thing to expect at that point — we just had to know. Waiting was almost unbearable.
And then Tuesday, September 11 was upon us. This was the day and it happened to be one with a date synonymous with tragedy. I actually considered calling our oncologist and telling him to wait, wait until Wednesday, a day with an ordinary date, to share this news with us. But I knew that was silly; the facts would be the same no matter what the calendar said. And we just couldn’t wait any longer.
And then Dr. Jeff appeared, bouncing like a child, excitement, relief, joy spilling over his professional doctor persona. Austin would be fine. Austin, as you know today, two September 11’s later, is fine. But it changed the day for us. Changed the meaning of an already significant date.
Alongside our sorrow for all that was lost on this day eight years ago, we celebrate all that was saved on this day two years ago. Alongside public commemorations, we have private ones. Alongside paying our respects, we pay our gratitude. In our house, this day is a good day. A very good day.