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I opened my mail today and, lo and behold, there was an envelope from Caring Today magazine containing four copies of the Fall issue, complete with my essay, hot off the presses. It’s available to read on the website, although there is a mistake in the tagline, which mentions autism and is clearly meant to describe some other piece. The print version reads “Loving Austin, It’s As Simple As That” and is accompanied by a beautiful image of a mother holding her child.
I am really happy with how this one turned out, the final version being nearly identical to how I last remember seeing it. My copies today included a nice note from the editor with which she signed off, “Keep that sweet boy safe.” Man, am I trying!
Perhaps you think I’ve been neglecting my blog because I’ve been lounging around watching the Grey’s Anatomy premiere on DVR? No, haven’t managed to see that yet (but I must before Thursday). Or maybe you think we whisked away on some relaxing mini-vacation? Nope,not that either. In fact, we’ve been busily finalizing the kitchen plans, including another 5am trip to the Kraftmaid warehouse (which I will write about another time). And then there’s this little tidbit, just so you don’t think that life gets dull around here (oh, what we would give for a little bit of that).
Yesterday after dinner, the boys were chasing a balloon around the living room, diving and laughing hysterically. When Austin hit his head. This is not terribly unusual and it wasn’t a huge deal. He cried and wanted to be held and then complained of a headache and asked for some Tylenol (the only medicine he’s allowed to take because it’s filtered through the liver and not the kidneys like Motrin).
Aware of the recent recall of Children’s Tylenol products, I decided to gather up all our bottles and check them against the lot numbers listed online. So I went through the bathroom cabinets and came away with a whooping five bottles, some opened, some still in their packaging, and brought them to the computer with me. The first thing I read was that the chewable “MeltAways” were not affected by the recall, so I let Austin have the recommended dose. Then, as I proceeded to compare the random strings of letters and numbers on our bottles to those listed on Tylenol’s website, Austin stood next to me playing with one of the bottles. A fact I was oh-so-conveniently ignoring until he cheerfully announced, “Look Mommy! Dink it!” and held up an open, and half empty, bottle of Tylenol.
So much for child-proof caps.
I stayed calm and asked him how much he had. After some prodding, he told me he took three sips. We went upstairs to consult with Mark, who thought it was probably no big deal. I really really wanted it to be no big deal. Trying to tease out just how much he might have had, Mark asked him what he was doing when he drank it, and he said, “Looking at the ceiling.” Uh oh. So I searched “possible Tylenol overdose” and learned a few lovely things: 1) There are usually no symptoms for 24 hours, and 2) By 24 hours, there can be permanent and fatal liver damage.
Alright. Back upstairs again where, I kid you not, I stuck my finger down my child’s throat –multiple times!–in an attempt to make him throw up. No luck. He was crying (duh) and I told him we either had to get the medicine out of his tummy or I’d have to take him to the hospital. He stepped forward and took my finger and put it in his mouth. Ugh, talk about heartbreaking. But even with all his heroics, nothing came up.
And what could I do? I packed a few books and some snacks and drove down to the ER. And, oh my God, we’ve been in the ER many times (too many times), but I have never seen it even close to this crowded before. It was packed, bursting at the seams, with most people in face masks which doesn’t exactly make you feel safe.
But they brought us right in, no time at all in the waiting room, and let us sit in the line of chairs on the back wall since all the rooms were full. After we were seen by an intern, she came back to inform us that, unfortunately, the blood test that detects elevated acetominophin levels can only be administered four hours after consuming the drug. The drug that he had taken a mere hour earlier. And I always thought that sooner was better with that sort of thing!
I asked if we could go home, promising to come back, which she and her attending physician both thought sounded acceptable . . . until they asked the floor nurse, who kindly informed us that because we were their responsibility, we had to stay. But we were welcome to leave the ER and go walk around or sit in the other areas of the hospital, away from potential germs. I saw this as a wink and a nod, and took Austin home for two hours. Mark and I got the kids ready for bed and let Austin fall asleep, before I scooped him back up and drove down that damn hill, one more time, one more time, for the rest of our adventure.
Still, there were no rooms and the nurse eventually took us into the nurses’ break room to draw his blood and then sent us out walking for a half hour while the lab ran the test. I thought (and hoped) that Austin would fall back asleep in my arms but no, he was thrilled to be all alone in the huge hospital hallways and we spent the entire time playing. Finally, finally, as the clock struck midnight and we were back in the ER, the doctor informed me that the acetominophin levels in his blood were nearly undetectable.
Undetectable! Ha. I just shook my head and thanked them all (for everyone was extremely warm and kind depsite the chaos reigning around us) and laughed at myself for the mother I’ve become. They repeatedly assured me I’d done the right thing. Better safe than sorry.
If this kid has nine lives, what are we up to now . . . ?
Lots of loose ends. First, the current house: Not much movement here. We’ve had really good turnouts at all our Open Houses and have received lots of positive feedback but no offers. It’s frustrating but we keep reminding ourselves that it only takes one person or one family to make this happen. So we’ll just keep plugging away and hope that that person walks through our door sooner or later (well, sooner rather than later would be nice!).
And the new house: I love it, love it, love it. But this is no small project. Demolition started on Monday and we’re now in the process of framing out the new kitchen. Tomorrow the GC and I will lay out the entire room, using all the cabinets we bought at the Kraftmaid warehouse and figuring out exactly what else we need to complete it. Then Mark and I will head back to Youngstown on another cabinet-hunting adventure this Saturday. Anything we can’t find on this trip, we’ll order that very day from Home Depot. Work will be done in two months at best, but you know how that goes. I’d love to be in before Christmas. A week ago I was saying Thanksgiving but I’m trying to be realistic here.
I promised to entertain you with before and after pictures but you’ll have to be quite patient for that. So here are some before and during pictures:
And so, another year goes by.
Today was Austin’s third birthday. Of course, we can’t make it through this day without reflecting back over his birthdays past and how very far we’ve come in three short years. We celebrated his first birthday while home on furlough, five days “off” sandwiched between 14-day and 15-day hospital stays. That was the year when everything was still so uncertain; we were still in the thick of cancer, with no sense of what the next minute or day or year could bring. So on that day, Friday September 21, 2007, we had everyone wish for him at the exact moment of his birth. And at 11:48am, all over the country and maybe the world, friends and strangers were blowing out candles and sending wishes off into the universe, carrying hopes of birthdays to come on their wings.
Then last year, when he turned two, everything seemed normal, extraordinarily ordinary. We threw a small party in the yard with family and friends and as he blew out those candles, I thought he would last forever. I imagined him growing up, going to school, riding a bike, learning to read, having a girlfriend, graduating from high school, going off to college, getting a job, getting married, becoming a father. I believed all of those things would happen, surely with some bumps, maybe not in the perfect order. But I really believed they would happen.
And then came March. And another tumor.
And suddenly, I felt like a fool. Like an ass. Like how could I have let myself be so naive, so hopeful, so trusting. How could I have so thoroughly believed the worst was behind us when the worst seemed just about to begin? In those weeks, I wasn’t sure he’d make it to 3, let alone 30.
But today came. And, because life is once again back to normal, it was all about dinosaurs. He had a party at the park yesterday complete with a mom-made 3-dimensional triceratops cake. Now before you go thinking I’m Robo-Mom (as Mark called me with affection late Saturday night as I pieced together this chocolate and lemon monstrosity), this cake was far from perfect. In fact, by the time the party began, the head had come loose from the body, the horns were toppling and we were all joking about dinosaurs becoming extinct. But Austin was beaming with pride as he announced, “Dat a cool cake, Mom.”
So I’m back in that place yet again, that place of believing so thoroughly in all he will do, see, be in his life. Of knowing he will go to kindergarten and learn to read, he’ll ride a bike and play (non-contact) sports, he’ll kiss a girl (or boy . . . whatever) and drive a car. There will be setbacks and maybe worse than setbacks. But we’ll make it. He’ll make it. Just look at him . . . .
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 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.
The long awaited transfer of the keys has occurred and the house is ours!
Emily moved out yesterday and the deal officially closed, so by the time I picked Braedan up from school, we were able to walk back to our new house. Of course, there are many months ahead before we can actually call it home, but we’ve spent plenty of time there in the past thirty hours, digging up bushes, stripping wallpaper, taking down dusty old curtains. The boys have had a blast running up one flight of stairs and down another or coloring on the walls (which I made sure they understood was a special event only and not something we would do everyday on our new — about to be painted– walls!). We had a picnic on the living room floor for dinner last night which they thought was pretty fabulous.
It reminded me of the day we took possession of this house seven-and-a-half years ago. We were supposed to get the keys on March 1, which happens to be the day after my birthday. Wait, let me back up. The months surrounding our purchase of this hosue were ridiculously full. I was training for a marathon, which I was excited about but was very time consuming. We were moving into our first home, also time-consuming. We (oops, I mean) I was planning our wedding, which I loved doing but because it was out of town and because it was at my family’s summer house and not in a facility equipped for big events with things like chairs and bathrooms and dance floors, was majorly time-consuming and fairly exhausting work. And most of all, the thing that topped it all off, the thing that was almost too much on its own, was my job which I absolutely, postively hated. I don’t think I have ever hated anything more than my job that year. I was teaching middle school in Cleveland, a position I had sought out believing it was a critical time to make a difference in kids’ lives. Well, I don’t even want to reminisce about all the horrible details that made that school so awful but suffice it to say, I was exhausted and stressed, beat down day after day.
So my birthday came and I made it through one more day and came home to Mark, who was preparing to take me out to dinner, “somewhere special.” I remember that I had changed into my comfy old overalls when I got home from work and I looked at Mark and said, “You mean I have to change my clothes?” And he thought about it for a moment and shook his head no, I’d be fine just as I was.
We get in the car and he suggests we drive by the new house, which was just a few blocks from the duplex we’d been renting. Then he pulls in the driveway to “show me something” and eventually leads me in the front door where dinner is set up on the living room floor, complete with candles and balloons and my presents hiding under a wheelbarrow (the first of my new homeowner-themed gifts).
So while last night with the kids running around like madmen, doing cartwheels on a wall-to-wall carpet that will soon no longer be, was not exactly as romantic as our first first house experience eight years ago, it was a pretty happy moment nonetheless.
And now the real work begins . . .
Now it’s my little one’s turn. Austin had his first solo day of preschool today and, let me tell you, it was not easy. He’d already done two days but I was in the building for both, a fact he knew and clung to for comfort and security. Today was the day that I’d actually be leaving, my first of many hundreds of days ahead with both my boys in school. I was excited, of course, for my 2 1/2 free hours, ready to have coffee with my mom and then take a pilates class. Austin? Not so excited.
As we walked from Braedan’s school to Austin’s, he complained the whole time, saying he didn’t want me to leave and threatening to not play with anyone (“not a single kid,” he said with defiance). We arrived and he kept whining, “But Maaaaahhhhhhhmmmmmmeeeeeee.” We hung up his backpack, washed his hands and in we went. Find your name from the pile, greet your teacher, see who’s parent helping, check out the Lego table in the hopes it would be enticing . . . But instead he was in my arms with his shorter ones tightly wrapped around my neck and crying.
Ugh. The worst. I know we all do it. I know I had to do it with Braedan when he was starting preschool and Mommy was leaving him behind to go take care of his brand new baby brother. I know if it were another new parent there, I would coach them through, telling them it will all be okay, this is just part of growing up. But somehow with Ausin, everything seems magnified. The very fact that we’re there, that he actually has the chance to attend preschool, seems like a huge deal. And, as I’ve said before, Austin is a wee bit attached to his momma. Comforting him has been my main job and such a significant part of our relationship, beyond the normal mother-child bonds. My physical presence has been his source of strength for the past two-plus years.
But I had to go. So after I exited, the teacher brought him to the window and I placed my hand against his and said goodbye one last time, walking away while his cry filled the air behind me.
My mom had come to take me to coffee, a first day of school ritual. She had a gift for me, a little figurine of a woman holding a bird in her outstretched arms, letting it go.
Letting it go.
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!
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.
One of the interesting things about sending a child off to kindergarten, especially as a stay-at-home mom, is suddenly having so little information about what they do all day long. For the past five-and-a-half years, I’ve had almost complete down-to-the-minute knowledge of every bite Braedan eats, each child he plays with, how many times he uses the bathroom. And now I send him off into the world for six hour stretches and then have to patiently coerce the teeniest bits of information out of him.
I’ve learned to ask very specific questions, well beyond “How was your day? What did you do?” I know enough now to ask who the “star” of the day was, which teacher walked them to the music room, what exercises they did in gym class, whether they finished the book they started yesterday. I know to take some of it with a grain of salt, like when I asked how long rest time was and he responded, “Uuuuuummmm, oooohhhh, maybe two hours?” I can ask about the boys who sit at the “orange table” with him, although I can’t yet picture their faces. This is a major shift after three years of parent helping at a co-op preschool, where not only could I put a face to each name but I knew which kid was obsessed with cats, which one always asked for seconds at snacktime and which one hated to play outside in the winter. I can only begin to imagine the black hole I’ll be left in when he goes off to middle school and answers all my inquiries with “Fine” or “Nothin’ much.” And then college, aaahhhh, where parents don’t even know where — or with whom! — their children sleep each night (sorry, parents of college students, for putting that thought in your heads, but really . . . ).
But he’s loving it. So happy with his teacher and excited about his new friends. He is slowly slowly slowly adjusting to the long days and early mornings, although we’ve still had many a meltdown in the late afternoon. This morning was the Father Walk, designed to get fathers more actively involved in the education of their children. So Mark took him to school and they had breakfast with several hundred others in the cafeteria. Mark said it was packed, well beyond what the organizers had expected and they ran out of food, which seems to be a pretty good sign.
So I will continue to ship him off each day into the grand unknown and will trust others to raise and watch and guide my child and then will savor the bits of his day that he shares with me. Letting go starts so early.