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Life continues to move forward in the most normal way. Austin had a chest CT today and it was the first time in the past two years that any procedure went more quickly and easily than anticipated. We’d decided to try it without sedation since it would be so fast and he didn’t require any IV contrast. We brought him down to the basement of the hospital, to a room he’s been in dozens of times before but has never seen because he’s always been sedated. Well, this time he and Mark, who met us on a lunch break from work, were playing catch with his new bouncy ball while we waited. First patient up was Austin’s beloved stuffed Cookie Monster so he could see how it all worked. Then our little guy was on the bed, strapped under the “seat belts,” with Daddy on one side of the scanner and Mommy on the other, both holding his hands. The woman working the machine talked to him through a microphone, telling him to smile and “Say cheese.” Assured he looked handsome, the whole thing was over in two minutes. Mark and I actually laughed and said. “See? This is going to be a piece of cake.” If only.
We should get results from the scan this afternoon, which we fully expect to be negative (heard that before?). And probably more news and recommendations in the next few days.
So now he naps and I am back on the computer, getting my digital therapy through writing and reading your responses. The outpouring of love and support and kindness has been, yet again, overwhelming. Many of you have apologized, either for not knowing the right words to say or not being present to do specific tasks or for feeling paralyzed with sadness and fear. Please, no apologies, people. You are out there and we feel you. There are no right or wrong words, there is nothing specific anyone can do to ease this path for us short of just being there, wishing for us, hoping for us. That is what makes it bearable.
You tell me that I’m strong and then I’m strong, you tell me Austin’s a fighter and then he fights, you tell us we’ll survive and we survive. It’s good enough, what you do. Reading, wishing, hoping, praying, crying, sharing, whatever, it means something to us, even if we never have the chance to tell you one by one.
I got a message today that talked about the sharing of grief, and how other people were willingly shouldering some of the pain and the fear for us. It’s like a big trade-off: friends and family and perfect strangers stepping forward and saying, “Here, give me some of it. I’ll hold on to your pain and your fear and your sadness and in return, you can have some of my strength and my energy and my hope.” A give-and-take, you are doing your part too.
I’m not particularly militaristic. Well, I’m not at all militaristic, but the battle analogy is just too apt to let go. We are preparing for battle yet again and our army is gathering behind us. Some of you will be on the front lines, engaged in the day-to-day combat. Some of you will be behind the scenes, cooking and cleaning (literally!). And some of you might just be the old-school colonial-style drum majors and trumpet blasters, rousing us for battle, cheering us on, creating enough noise to drown out the heart-thumping fear.
And you all have signed up for this, volunteered. You could walk away, say, “No way, I can’t even follow that story anymore. It is too damn sad.” But you don’t do that. You keep coming back for more, re-enlisting, another tour of duty. And you put yourselves at risk, right in the crossfires, because the more you read, the more you care and then you too stand to lose. I gave our babysitter an out the other day, told her she didn’t have to do this if she didn’t want to; she could cut her losses before things get too ugly. But she refused, stood her ground, right here beside us, wedged between Braedan and Austin, ready to go wherever this road takes us.
Austin’s Army is gathering, standing behind us and around us, ready to fight.
When I looked out the window this morning and saw a fine dusting of snow covering our cars and the top of the swing set, I shook my head and started to say, “I really thought it was over,” but didn’t quite finish that statement because what do I know about over?
I do know we’ve been making the most of our time together, before the battle begins. We went to the Natural History Museum on Saturday, let the boys climb on the dinosaur outside, watched the otters dancing playfully in the water. We took a hike around the duck pond yesterday, sat on some rocks as the geese swam by. Today we went on a “train ride,” about six stops on the RTA, and then out for a breakfast of Mickey Mouse-shaped pancakes and bacon. We’ve taken lots of pictures and let the boys ham it up for the video camera. Mark and I spend a lot of our time watching them both run and jump and play, shaking our heads because it is just so unbelievable. He is so fine. Today he is so fine.
But things will change pretty quickly. We’re still waiting for the experts to report back with their suggested plans. I imagine we’ll sit down with Jeff on Thursday or Friday and lay it all out. There’s a possibility we might go to St. Jude’s in Nashville, whether for the initial surgery or for all of treatment remains to be seen. Jeff will help us sift through all the recommendations to decide if that’s necessary. As he said on Friday, there’s no competition between Rainbow and St. Jude’s (“This isn’t the Cleveland Clinic we’re talking about”) and Austin will simply go where he will get the best treatment. We really hope it doesn’t come to that though — talk about making the already-hardest thing that much harder. Without our families and friends around us, without our own house and own beds to come home to, without the familiar faces we’ve come to trust and love at the hospital. And I can’t begin to imagine how hard it would be for Braedan to have his life so flipped upside-down, as if a sibling with cancer isn’t disruptive enough. He loves his school and loves his friends, and needs every little bit of normalcy we can muster. But we’ll do what we have to.
We told him. Braedan, that is. On Saturday afternoon, while Austin was napping and I was afraid to wait any longer because I’d been walking out of the room in tears too many times already. So we sat him down on the couch between us and I started to cry and we just said, “We want you to know that Austin’s cancer has come back.” He looked at Mark and looked back at me and then Braedan, my boy with a vocabulary that puts college students to shame, who can hold a fully adult conversation with just about anybody, took a deep breath and said, “Poopy.” Mark and I laughed and wiped away our tears, “Yeah, that’s what we think too. This is definitely poopy.”
We talked about how it was okay to feel sad and scared and even mad, either at us for having to take care of Austin so much or at Austin himself for getting so much attention or just mad at nothing and everything all at once. He sat up straight and shook his head vigorously, “Nope, I’m fine. Not sad. Nope. Not scared.” My eyes met Mark’s as we were both wondering if we should push, “Hey, do you have any idea how bad this is?” but decided instead to let him protect himself in whatever way he needs to. Right now, the cancer isn’t visible and isn’t conceivable, even to us sometimes, but as we move forward and Austin’s sickness becomes painfully obvious, there will be plenty of opportunities for us to keep talking to him, for him to finally let us know how sad and scared and mad he is.
In the meantime, he told Austin! I had just warned Mark about it, and he said, “Oh Braedan’s not gonna tell him that quickly.” Well, within thirty minutes of waking up from his nap, Austin hears, “Guess what? You got your cancer back!” Oh boy. I talked to him about it then but he really doesn’t understand. He was on the swingset, I was pushing him “higher, mommy!” and he was excitedly awaiting the arrival of his favorite babysitter. So “cancer” doesn’t mean much right now. Good for him.
Mark and I are okay. We have had some truly horrible moments and some truly happy ones. I have vascillated between depths of despair and bits of pure optimism. I spent the first two days completely defeated, like we’d the lost the battle before it had even begun. My mind insisted on returning over and over again to the worst possible outcome, I envisioned scenarios that I cannot put to words for fear that might make them real. But it’s changing, I’m changing. I can feel my strength gathering, toughness and single-mindedness swirling around inside me. I am preparing. We will do this. I will be ready.
I think I must be rising. I am rising.
We believed it was gone. We really really really believed it was gone. Not just that we wished it was gone or wanted it to be gone. It was gone.
And now it’s back.
Dr. Auletta came over yesterday afternoon — you know you’re in trouble when your oncologist makes house calls. We’d already talked on the phone, we already knew. Mark had come home early from work, I had cancelled an afternoon meeting. But we went through the motions with the kids: cutting their fruit just the right way, pushing them on the swings, looking up with an appropriate display of pride and delight every time one of them shouted, “Look at this, Mommy!” I read to them, wondering how on earth I had ever liked The Lorax because it was so god-damned long. I laughed with them and shook my head in wonder at how marvelously healthy they seem.
But Austin is not healthy. The “thing,” the little blob we truly believed was scar tissue or a bit of packing cotton left over from that last surgery in October 07, is actually a tumor. “Another of Austin’s Wilms’ tumors” is how Jeff described it when he called. There is a lot we don’t know, but what we know is enough. Austin’s cancer has recurred.
And recurrence, you know, is pretty bad. This means that these particular cancer cells are tough, tougher than the rest were, sneaky like they’ve been hiding in there plotting their return, waiting until we had fully settled into our normal lives before rearing their ugly heads again.
But it’s not doing anything right now; it’s not growing and it’s not harming him in any way. So we’re waiting. We’re gathering information first from all the best sources before we develop a plan, a new protocol for moving forward. Jeff sent all of Austin’s files to St Judes and also to the “Wilms’ tumor guru” in New York who’s been following along since the very beginning. Plus Dr Elder, the one in Detroit who did Austin’s last and trickiest surgery, is coming in on Sunday to look at the slides and see what he thinks he can do. There will be another surgery, that’s pretty certain, but what we need to decide is whether we remove just the tumor or remove the tumor and what remains of that kidney. It depends in part on whether there is more cancer in there and on whether this little tumor is attached to the kidney in any way, something we can’t tell from all the scans. And of course, dialysis looms large once again, something that fills me with dread.
And then there’ll be more chemo and probably radiation this time. It is these thoughts that put me over the edge, that move me from numb disbelief to gut-wrenching sadness. I’m afraid it will change him, all this torture, squash the light out of him, make him a sick child. I don’t want him to be a sick child. And radiation is going to make him sick — he’ll be nauseous and skinny, he’ll be pale and bald, he’ll be sick. My Austin who is not just “okay” right now, not just “normal” — he’s vibrant, he’s wild, he is full of life. He hops from one place to the next, especially after I say “Hop to it, kiddo” which he takes quite literally. He jumps down the stairs, skipping three or four at a time. And you should see him jump on the bed: he counts as he bounces up and down and at five, he shouts, “Time for funny stuff” and dive bombs onto the mattress, landing flat on his face without ever putting his hands out to catch himself. He is as alive as they come.
And now this. Mark commented yesterday on how the outside and the inside of him are so totally different, not aligned, like no one told him he was sick so he just moves forward at light speed, living it up, making silly faces, laughing, always laughing. We have had a really good year. A great year. I don’t mean for that to sound so forboding or conciliatory like when some old person dies and everyone says, “Well, they lived a long and happy life,” but we have had a really good year. And I am so glad for it. I am so glad he got to be a kid, to be himself, to show us all who he is, before we head back down this road.
We’re not acting fast. This Tuesday, he’ll have a chest CT to make sure it hasn’t spread to his lungs which would be horrible but is very unlikely because he had a chest x-ray just on Wed and they’re pretty accurate in picking this up. So that’s an out-patient procedure, just a few hours. And then we’ll wait for word back from all the experts we’ve consulted before we decide what to do. As many of you know, Austin’s case was rare to begin with and it has only become more and more rare as we’ve moved through this. Whatever we do now is going to be brand new, a plan devised for him alone, without numbers and stats to back it up. But the best minds in the country, and probably the world, will back it up. And that will have to be enough.
So we should be home, going through the motions of normal life, for at least a week, maybe two. I’m happy to have this, although I know it would make some people crazy, like “let’s get in there and do something already.” But I know how good he feels right now and I am in no rush to change that. So we’re going to go on lots of outings, enjoy ourselves to the fullest, before we start this journey anew. Plus, we haven’t told them yet, either boy, and it is going to be brutal on Braedan this time. He just knows so much more, he’s so very smart, and he loves his little brother so very much.
You know, I started this blog just two days ago as a marketing tool. I’d studied the industry and knew I needed to generate some media attention and garner a following which would then help me attract an agent and secure a book deal. This was a selfish endeavour. It was about me. I was actually worried about coming up with enough new material to keep people interested and coming back. Jesus, what I would give to be sitting at my computer late at night wracking my brain for clever new things to write about. None of that matters anymore. This is about Austin. It is all about Austin.
We are about to set off on a terrible new journey, one we never wanted to take, one we really believed we would never be forced to take. And it is going to be hard. We know a lot more than we did the first time, we know our way around pediatric oncology, both literally and figuratively. But this is new ground. I don’t think we can yet imagine the challenges we’ll face, although I lay awake in bed all night imagining them. But we will do this. We will do everything we have to, we will do everything we can.
And we will not lose this child.
Most days I’m a normal mom. I do normal mom things, think normal mom thoughts, feel normal mom feelings. I’m woken up by Mark mere minutes before he heads to work, having completed his whole morning routine with Austin at his heels, asking endless questions, knocking over his juice, begging to be held. The boys and I stand at one window and then race to another to get in as many waves as possible before Mark disappears down the street. After a drawn-out breakfast with much prodding, I drag them to the babysitting room at the gym so I can work out, then surprise them with their bathing suits and a trip to the pool. Braedan splashes and jumps and doggy paddles around. Austin is blissfully unaware of the sadly questioning looks he garners when people see this robust and seemingly healthy child with an eight-inch scar cut across his belly.
Most days we play, laugh, make a mess. I get fed up and yell when they fight over “my special crayon” or spill the cup of milk I just (just!) reminded them was there. We have a new ritual lately, one Mark introduced during their recent “boys’ weekend.” Everyone piles their hands on top of one another’s, counts to three and shouts “Buddies!” while throwing our hands high into the air. After Mark left for work the other morning, Austin came running in with a forlorn look on his face and dramatically announced (in his funny backward talk), “One . . .two. . . fee, buddies. Forgot!” We’ve been “raking buddies” and “Candyland buddies” and “hot dog buddies.” And, this past Wednesday, we were, yet again, “hospital buddies.”
There we were again, like we were stuck in a sick and twisted time warp, back on the Pediatric Oncology floor. Just two nights this time, no big deal, nothing like the 14 and 15 day stays we had a year-and-a-half ago. This is different. I mean, this child is healthy. He’s been in remission for an entire year now. I just watched him run, jump, play. He’s growing and talking and peeing in the potty. This is not a sick child.
But there’s a shadow, a little blob we’ve been following on his recent CT scans and we have to know what it is. So, it’s biopsy time and suddenly I’m that mom again.
I’m the mother of a sick child, a role I’ve played for far too long already. I’m the mother other people look at with sympathy, pity, fear. It’s a glance you get when you’re one-handedly pushing your bald baby through the halls of the hospital while dragging an IV pole along behind you. It’s a look you get when you step off an elevator following behind your “sleeping” (read: sedated) baby on a bed, being pushed to his next procedure. It’s a look of sadness (poor them), wistfulness (wishes for them) and gratitude (glad I’m not them).
I got the look Wednesday afternoon as I stood pacing outside the room where the biopsy was happening. They’d said it would take an hour, maybe one-and-a-half, and now it was two hours later and I was tired of sitting and listening to horrible families sue each other on court TV. There was one other couple there, a woman standing by her husband who was on a bed in a hospital gown, awaiting his turn in the same room. When the intern came out to reassure them they’d be right up “as soon as we finish with the baby,” the woman turned and gave me that look.
So I’m back in that mode, now waiting and worrying, not sure what our future holds. Results might come back today, might not arrive until Monday. We expect it to be nothing, scar tissue or some benign blob in his little tummy. He seems so healthy, life seems so normal. But we never know. So again, today, I am that mom.
I am the luckiest.
I have a family who stands beside me, backs me up and cheers me on. I have a rock solid relationship with my rock solid husband Mark. I have friends who encircle and enrich me. I have a strong and healthy and able body, despite having had type 1 diabetes for twenty-three years. I have enough money for everything I need and most of what I want. And I have two little boys, Braedan and Austin, who fill me with delight and wonder every single day.
But Austin is not the luckiest. Diagnosed with bilateral Wilms’ tumor, cancer in both kidneys, in July 2007 when he was just ten months old, Austin has been forced to endure more horrors in his short life than most of us ever will. But he is a survivor. After eight months of treatment, he has been in remission since March 2008.
The months, and now years, following his diagnosis have taught us a lot . . . about fear, hope and strength, about each other, ourselves and our boys, about life, luck and love.
And I’m ready to share.