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My, what a difference four years can make. Last night was the fabulous Fairfax Cabaret, an every other year talent show that takes place on the high school stage. There’s a full stage crew, spotlights, headset microphones and all the accoutrements of a professional production. And it is so much fun, with everything from piano and violin solos to groups of girls singing and swaying to Beyonce. It is, at its essence, classic Cleveland Heights, capturing all that we love about our school and our district.
Because it’s only every other year (just too much darn work for the PTA to do each year), we’ve only been to two prior to this one. And the first, held in January 2010, was quite a different experience for us. Braedan was in kindergarten, Austin was in treatment, and I was understandably absent from all volunteer activities at school. On this rare occasion, we left a severely immuno-compromised Austin home with a sitter so Mark and I could take Braedan to the big event. It was the end of a horrible week, in which Austin’s mediport had failed during our week of in-patient chemo and he’d had a surprise mediport-repair surgery (“Surprise!”) scheduled mere minutes after he consumed two grapes for breakfast (two grapes!), rendering him unable to be anesthesized for a full and excruciating eight hours. That particular surgery, which was supposed to be “quick” and after which we expected to go home, was instead long and unsuccessful and left Little A with a PICC line instead of a mediport and left the two of us in the hospital for yet another night. We were on edge, exhausted and beat down, by the time we arrived at the high school for the next night’s festivities. I don’t remember much about that particular show, aside from multiple tear-filled conversations with people who innocently asked me how Austin was doing.
But all of this is beside the point, or maybe it is exactly the point, because last night, four short (and very, very long) years later, Austin was up on stage doing this. He’s the first one to somersault toward stage left (your right) and is in the far right of your screen for most of the performance (or the front of the right line of dancers). Click the HD button in the bottom of the screen to get a clearer version.
And of course, we cannot let this review of the night go by without highlighting the brave and confident and funny and super cool Braedan, in his Cabaret jammies:
And now I can confidently look ahead to Cabaret 2016 and Cabaret 2018 and all the years after that.
It never ceases to amaze me how quickly we can revert back to our old roles. Our seamlessly we become who we once were: the patient and the advocate, the comforter and the distractor. It’s as if we never left that old hospital world; it all feels so familiar, so deep in our bones, even in a brand new space.
We awoke super early Friday morning, if you can call 3:45 “morning.” Driving down the driveway at 4:30am to arrive in pre-op by 5:30 made me ever thankful that we lived so close to our hospital for all those years. (We ended up at Akron solely for insurance reasons — which will change in the new year — and, aside from follow-ups won’t be driving back there again.)
By 7:30, Austin was walking down the hallway hand-in-hand with an operating room nurse, with just one backward glance, but no tears, as he marched off to surgery. A quick hour-and-a-half later, he came to in the post-op room and we were by his side, offering popsicles and comfort. The ENT said his tonsils were enormous, but came out with no problems. And the hand surgeon was very pleased with how his finger repair went, no nerve damage despite many layers of scar tissue. He has a heavy red cast up to his elbow, only there to keep him from using his hand. The doctor wasn’t even sure he was going to give him a cast until he asked me how active Austin is. Once the words “gymnastics” and “cartwheels” passed through my lips, he knew just what to do. (And I’ve seen Austin do three cartwheels already, using the cast as a study foundation.)
We spent the afternoon mindlessly rotating between the floor playroom and his bed, trying to make the minutes pass by a little more quickly. A couple of books, wandering aimlessly through the halls, cajoling with sherbert and applesauce. Three good hours followed by the miserable half-hour leading up to the next dose of painkillers, followed by the miserable half-hour it takes to kick in. Hospitals are just plain boring, there’s no way around that. Akron was a lovely place; we went downstairs for a dramatic reading of How The Grinch Stole Christmas, and met Ronald McDonald on one of our walks. That evening as we sat on the bed eating dinner, a troupe of carolers in Renaissance costumes came singing down the halls. And a volunteer knocked on the door to read Austin a bedtime story.
So, it was fine, but still, it’s a hospital and I can’t help but feel trapped when I’m there. And they’re all amazingly the same, the colors of the cupboards to store your clothes and the placement of the buttons on the walls, the smell of the rubber couch I slept on and the feel of the sheets that have been washed ten thousand times. Austin did okay throughout the night, well, as expected, I guess. He was up at midnight and 4am needing medicine. But he ate surprisingly well Friday evening, chowing down an enormous l tray of soft foods for dinner. We were released by 10am on Saturday and safe at home an hour later.
He played hard and happily that day and I thought I’d for sure send him to school Tuesday, if not Monday. But yesterday was worse and today he took a three-hour nap in the morning, so we’re laying low. His hand is fine and he’s driven to be independent, managing to snap his jeans and write his name with both his left hand and his casted one. But his throat is very painful and he’s struggling to eat anything at all. Even popsicles hurt going down.
But we truly believe this could be our last overnight in the hospital for many, many years. We called it an Austin tune-up, just getting everything into tip-top shape for years and years ahead of normal, regular childhood. I imagine that the next time he sleeps in a hospital bed, he won’t scoot over halfway through the night and beg for me to slip in beside him. It’s sort of bittersweet, that thought, but as hard as watching my baby grow up may be, I will always take it over the alternative. Always.
Austin is having surgery this Friday at Akron Children’s. Surgeries, actually, two procedures rolled into one. They’re minor and non-cancer related. Just a long overdue tonsillectomy and finger repair. You may remember that his swollen tonsils (besides keeping us all up at night) prevented him from being sedated for his May MRI, requiring us to go through the surgical department for full-blown anesthesia. While we hope he’ll have no future reasons to be sedated, we also realize that’s pretty unlikely given his history (and his future). And the poor finger . . . well, that thing’s been bothering him for more than a year as it’s now clawed and unable to fully straighten. The lovely surgeons at Akron have coordinated their schedules so he only has to have one surgery, which I think (I lose track of these things) brings him up to eleven.
The interesting thing about this time is how nervous Austin is. He’s been so young every time in the past that all these crazy things happened to him without his full (or at times, even partial) understanding. This time, he is well aware and asking many many questions: “What day are we going again? Is tomorrow when we leave at 6 in the morning? How long will I have a cast on my hand?” I don’t think he’ll have a cast on his hand at all, more like a bandage, but he’s definitely concerned about not being able to write at school. His teacher has assured me this won’t be an issue (he is in kindergarten, after all), but Austin is a participator — he joins in to any and every activity possible with his full self, so standing on the sidelines will be tough. Especially when it comes to missing his regular Wednesday and Saturday tumbling classes. I already have to set silly rules to contain the near constant acrobatics, like no cartwheeling while crossing the street and no flips after 8pm. Of course, I think it’ll probably be his tonsils that cause the most pain, but that seems a bit too abstract for him to worry about. And I don’t exactly want to encourage him to fear something else!
Sp we go in early Friday morning and will stay over that night. Of course these are both typically out-patient procedures but since Austin is in no way typical, they want to observe his blood pressure and hydration. This will be our first overnight in the hospital in a record-breaking two-and-a-half years, since an unexpected fever in August of 2010. I just reread that old post, “Interruption,” not quite remembering the circumstances of that particular stay. Its closing lines were right on. It finally seems that, despite swollen tonsils or Franken-fingers, we have indeed made it safely to that wide-open future I could only hope for back then. We are living it.
. . . another hospital. A new hospital this time, too.
Don’t worry — nothing bad happened. I just finally got around to making appointments for the non-essential, non-emergency, non-cancer-related issues that have been bothering Austin for the past six months. First, those pesky tonsils. Which don’t actually bother Austin at all. I mean, he snores, loudly, but that doesn’t bother him. But we simply have to make sure he’s able to be safely sedated for any future procedures so today we visited an ear, nose and throat specialist at Akron Children’s (long story there, related to annoying health insurance issues, but I must say that even with an hour drive, Akron Children’s was very pleasant to deal with).
Then it was off down the hall to see the “plastics” guy. No, Austin’s not getting a new nose (his current one will have to do). Remember the dreaded finger injury? (God, how could we forget the dreaded finger?) It’s turned into quite a claw lately, which we’ve labeled the Franken-finger, and which causes him a lot of pain and discomfort. It’s always the little things . . .
Both doctors agreed that “quick” surgeries are in the books. Luckily, they will coordinate their schedules so we can wrap both procedures up into one surgery, likely over winter vacation (since, you know, kindergarten is the new first grade and the kid’s gotta be able to hold a pencil!).
It was relatively easy, but there’s something about hospital days that exhausts me. I think I’ve finally accepted that it’s not the actual day or anything in it that’s tiring (I mean, today was mostly spent on the freeway) but something much more psychological for me. Maybe it’s the reliving I’m forced through (multiple times) as I recount the date of each and every surgery and list the names of all the current and past medications and check the damn Yes box next to so many of the “Has your child ever….” questions, complete with the wide-eyed amazement of the nurse who unsuspectingly asked our medical history. I inevitably come home and feel completely wiped, like I’ve done something so stressful, and then have to, ugh, make dinner and, ugh, oversee homework. It’s a bit silly, I guess, but also completely logical. Ah, it’s always the little things. . .
But tomorrow really IS another day . . .
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.
What a difference a year makes. I find myself struck day after day after day by the power of the memories of last year. Right before Thanksgiving (last Thanksgiving), Austin had an ultrasound that revealed a new spot. New, as in not the same spot we’d been watching and worrying about all fall. So we knew, at that point, we almost, mostly, practically knew what that his cancer was back. But we weren’t quite ready to commit yet, to actually do anything about it.
So we waited, a few more weeks, for a repeat ultrasound. And that happened on December 7. One year ago tomorrow. And that, well, you can read it here. It was a Monday and then I sent Austin back to school that Tuesday and Wednesday because I knew these would be his last days there for a good long while. We spent one quick night in the hospital that Thursday for a CT scan and then returned the following Sunday for the next surgery and big pre-Christmas stay.
But it’s that day of school on the 8th that I remember. I dropped him off in his classroom and walked out as he cried for me, held tight in the arms of his teacher. It wasn’t unusual, he cried when I left on most days last year (and many this year). He ends up happy, within mere minutes, so I knew in my head it would be okay. What I felt in my heart was another matter. That walk out was one of the hardest things I have ever done in my life.
One of my closest friends happened to be parent helping in her daughter’s classroom that morning. And I had stopped to see her for big hugs on my way in, but I didn’t want to stop again so I walked out the door and down the path to my car, and I suddenly just lost it. Another mom came walking up, one I know well who had already read the previous night’s update and I just fell into her arms. She was holding a baby bundled in a snowsuit but managed to hold me too. And I sobbed. And I really wanted her to go back in and get my other friend for me, but I couldn’t bear that one minute when I’d be standing out there alone in the snow, while parents who didn’t yet know wandered past me. So she did the job (thanks, Lisa) and I mumbled over and over into her winter coat, “I don’t know if I can do this again. I don’t want to do this again.”
But, boy, did we do it.
On this weekend last year, we chopped down the top of a pine tree here in our new yard and brought it back to our old house to serve as our Christmas tree. Well, it turned out to be pretty spindly and lopsided and very Charlie Brown-like:
So we made up for it yesterday by buying two trees. One for the living room, which the boys are calling their own because they finally got their wish to have colored (as opposed to my preferred white) lights. And another for the dining room, where I finally got my wish to have a perfectly color-coordinated tree.
Yup, we definitely did it.
Pediatric Surgery, known to we hospital insiders as “Peed Surge,” a place I’ve visited far too many times over the past three years . . . is somehow where we ended up yesterday.
No, there is not another freak accident to report, just a freaky sort of day, where everything seemed upside down and backwards and I couldn’t quite figure out why we were where we were.
On Wednesday afternoon, the secretary from the orthopaedic surgeon’s office called to schedule Thursday’s appointment to finally remove those stitches. She said, “1:30” and I quickly said, “Oh perfect,” relieved that the boys could stay at Dinosaur Dig camp until noon. Then she said we needed to arrive at 11:30 and that Austin couldn’t eat in the morning.
Oh bother, I thought, why on earth do they schedule kids in the afternoon if they’re not allowed to eat anything? And why on earth do we have to be there so darn early if this is supposed to be a ten-minute procedure? But I figured I knew my way around this stuff and didn’t ask any questions (insert foreshadowing music here). I got Austin up early and gave him a few bites of applesauce (more foreshadowing music), along with his morning meds, and dropped them off at camp for a quick two hours.
I picked them up at early at the Children’s Museum, which happens to be located a mere quarter mile from Rainbow (more music), then brought Braedan to a friend’s house and continued on my way with Austin to the hand surgeon’s Chagrin office, which was where we’d seen him for each of the past two weeks. Twenty-five minutes later we arrive and the woman checking people in was very confused when I said why we were there. She made a quick phone call and then told me, “He’s listed here for surgery at 1:30 downtown.” Surgery? What do you mean, surgery? “That’s what it says in our system. Are you familiar with Rainbow Babies’ & Children’s Hospital on the main campus?” Huh. “Oh yes,” I say and leave in a huff, retracing our steps all the way back, past our house, down the hill, into the all-too-familiar parking garage.
By this time, Austin, exhausted from begging for food, had fallen asleep, so I carry my 37-pound boy in my arms to the pediatric sedation unit. The woman there got the same confused look on her face and, not seeing his name on the list, called over to Peed Surge. Yup, they were waiting for us.
Good thing I know my way around that hospital with my eyes closed. Down one elevator, through the halls, up another elevator, follow the blue butterfly stickers on the wall and finally, we found ourselves back in Pediatric Surgery, for the eleventh time in Austin’s short life.
They checked us in after a short wait and we had to go through the whole rigmarole (yes, that’s really how you spell that word — I just checked): medical history, medications, reactions to blood or anesthesia, etc etc. The orthopaedic surgeon explained apologetically that he isn’t allowed to administer sedation himself, each piece of the health care puzzle now so highly specialized that you have to go to ten different departments to get anything done. He was surprised his secrtary hadn’t explained it better, but I think maybe it was my own fault for assuming I was already an expert. It was still expected to be a minor procedure, propophol through the gas mask and quick removal of sutures. I felt sort of silly that we were even there, getting ready in pre-op, just to pull out some stitches! A far cry from the myraid other reasons we’ve been in that room.
And of course, being in that space, we bumped into Austin’s nurse practitioner (“What happened to Austin now?!”), the surgeon who did December’s kidney sparing surgery (“What are you doing here?”), the surgeon who did his first two surgeries three years ago, and eventually even his oncologist who was checking on another patient coming out of surgery (“Krissy. . . ? Are you guys okay?”).
And then the anesthesiologist showed up and was most concenred about those few bites of applesauce he’d had. I tried to excuse myself by explaining that I thought he was going not to surgery but to sedation, where you’re allowed to eat four hours prior, but she was not pleased. She wandered off to see if we could reschedule for 3, which I was dreading as Austin had been crying for food for the past hour and a half already. Eventually she conceded we could move ahead and do it, only after listing the rare but lousy things that could happen like applesauce coming up and getting stuck in his lungs, giving him pneumonia that would result in hospitalization. She thought the risk was negligible and I thought it sounded better than dealing with an increasingly starving pre-schooler for two more hours, so I signed the consent and finally, finally, it was time.
I donned my space suit and walked into the operating room with him, leaving only after he was knocked out, then wandered the halls until I had enough phone service to call Mark (“You’re where??”). Fifteen minutes later I was back in post-op, standing by his hospital crib, waiting for him to come to. Then another thirty minutes of recovery, complete with a popsicle and juice, before we were finally on our way.
No damage at all to the hand. The doctor even said he doesn’t need to see us for follow-up unless we have a concern (“You guys spend enough time in hospitals.” Do we ever!). Austin’s now free to swim and dig and grip and do all those other things that kids with two working hands do. And Mark has already taught him to bat as a lefty, so we’re all good. All good.
Mark and I both feel comfortable leaving Austin’s kidney in until we have a real reason to take it out. We will continue to do abdominal ultrasounds once a month to watch for potential growth. And if anything shows up, we will obviously remove that kidney without hesitation. But it simply does not seem right to us to do something that will cause such immediate and long-lasting harm if we don’t absolutely have to.
Without doubt, we’ve given this great and careful consideration. We have the backing of Austin’s doctors, who have promised that if they believed we were doing something dangerous or too risky, they would intervene. We know that, in addition to the obvious risk of cancer returning, there is also the possibility that the kidney will simply fail on its own before April 2012 (when Austin will finally be eligible for transplant). And of course, if that happens, we will remove the kidney without hesitation and start dialysis. In fact, we expect that. We’d both be surprised (and thrilled) if his kidney lasted for the next twenty months. And if it doesn’t, well, yeah, we’ll be devastated but at least we’ll know that we’re doing these awful things because we have to.
The research and facts had us split down the middle so we relied heavily on our gut instincts to help solidify this decision. One key moment was imagining myself during the actual kidney-removing surgery. I have paced those hospital hallways many a time while my child was laying on a sterile operating table with strangers in face masks opening up his small body. Six-hour, eight-hour, even ten-hour separations while Mark and I were filled with fear and anxiety. But every single time, I knew it had to be done. Not one of those surgeries was an option. For some of them, I was even excited: Go on, get that obscenely enormous tumor out of him. Or Come on now, good or bad, find us some solid information so we know what to do next.
But this? For this, I imagine myself second-guessing, triple-guessing, our decision every step of the way. I imagine myself at that moment of no return, racing back down the hallway and bursting through the doors through which no parent is welcome and insisting they stop. Stop, stop, you can’t do this to my child!
That is no way to think.
And then I imagine being at home the night before, climbing into bed with my boys and telling Austin what was set to take place the following day. How on earth could we explain such a decision to our happy, healthy, normal child? A boy who, despite all the extraordinary things he’s been through, still has completely ordinary expectations: He will go to school and have playdates, he’ll swim and learn to ride a bike, his body will function like everyone else’s. How could we look into his big brown eyes, again bordered by long dark lashes, and say, “Well, honey, this just seems like the right time to remove a part of you that you absolutely require in order to live a good life?”
No, no, that’s just not right. We will do what we have to do when we have to do it. And not one moment sooner.
Today is not PICC-removing day after all. There was some confusion about whether or not Austin actually needed blood and it’s now all been moved to tomorrow. His hemoglobin is not low enough to require a transfusion right now but it’s steadily declining so his oncologist said we could either keep the PICC in and give him blood next week or give him blood through a peripheral IV next week or give him blood preemptively tomorrow while the line is still in. If only all our decisions could be so easy!
Good thing Austin’s sense of time is a little fuzzy. I told him it was moved to tomorrow and he said, “The one day after this day?” just to make sure. Yes, honey, the one day after this day. The PICC hasn’t been all that bad, nothing like I expected when I walked into the pre-op room back in January, hoping for a repaired Mediport, only to see Austin with a bandaged arm. And my heart just sank and I thought, “Oh come on now, not a tube dangling right out of his arm! That’s gonna get stuck on things and get dirty and probably get ripped out by him or his brother!” It seemed like such a big deal in that moment (I just reread that particular post and everything seemed like a big deal right then) but we’ve all been pleasantly surprised by it. It doesn’t itch him like the Broviac used to and aside from that crack in the tubing back in March that required an extra surgery and a few scary failed-flushing attempts, it’s always worked the way it’s supposed to.
But it will be nice to not have to flush it three times each day, including late at night when I have to finagle the line out of his pajama sleeve of the arm he’s inevitably asleep on. And he is most thrilled to take a bath without keeping his left arm propped on the edge of the tub, all wrapped up in Press n Seal and tape. I think he’s almost as excited for that as he is to go swimming.
And now, just the one day after this day.
Yesterday, I briefly mentioned today’s GFR and its “enormously consequential” results. Perhaps that got lost in my (self) motivational running analogy, but here’s the deal: Austin had another GFR today, the kidney function test we’ve been using to dose-adjust his chemo. As you may remember, his last results were a pretty dismal 34. If it dips below 15, he will begin thrice-weekly hemo-dialysis. This will necessitate another surgery, almost immediately, to place a dialysis catheter in his right sub-clavicle vein. It may also necessitate the removal of his remaining kidney.
Usually, when someone has chronic kidney disease and their kidney(s) fails, that non-working organ is just left inside them to shrink and wither away. In Austin’s case, because his kidney is the point of origin for all his cancer, we obviously don’t want to let it just sit in there if it’s not doing us any good. However, there is a possibility that he could regain some kidney function once the stress of chemo is removed. Sooooooo, you can see that we might find ourselves in another sticky dilemma: Do we keep a non-functioning potentially cancerous kidney inside his body in the hopes that it might work again in a few months or do we cut our losses and just remove the damn thing?
Ugh, not fun choices.
The other possible outcome from today’s test (results of which should come sometime tomorrow) is that he falls somewhere between 15 and 30, which means his kidney is still chugging along and would still work in the “outside world,” but that it’s not strong enough to filter out the chemo we’re about to pump through his bloodstream. Hmmmm, then what to do? Forgo chemo — and risk yet another relapse — or jump in and speed up something we hope never happens?
Again, not fun choices.
There may be a chance to do temporary dialysis just on the days he receives chemo, although that’s not standard protocol and not strongly recommended by the oncologists. They think we should stop trying to delay the inevitable and just get rid of it. We’re not ready to do that yet. I strongly believe that he and his body (and his family) need a break, more than two days away from the hospital at a time. And as long as that doesn’t cause obvious harm, we should do all we can to give him that. When does the risk outweigh the benefit? Can we ever really know? God, haven’t we been having this same conversation for the past six months?
Of the many possible results from today, there is only one that is any good: that his GFR has stayed the same, a nice steady number in the low 30s. Not great, but certainly good enough. It may not be the most realistic outcome, but at least we have something to wish for.