The best laid plans

You know what they say about those, right?

During Austin’s second bout with cancer, when he was 3 1/2, we were told that his kidney would probably last until he hit puberty when a growth spurt and added muscle mass would put it into overdrive, causing it to eventually peter out. At the time, we thought that was great news. (Who can even envision your child actually reaching puberty when they’re just 3 1/2?) We’ve even joked over the years about how that same piece of news would sound so horrible if told to “regular” parents, but how welcome it was for us. I mean, we were being given ten good years.

And ten good years we’ve had. Austin will be 14 this fall, he’s taller than I am, and he has to shave his little mustache every few weeks or so. The child has definitely reached puberty.

                               

So it’s happening. He had been in Stage 3 renal failure for most of the past decade and is now in the lower end of Stage 4. Based on what his numbers have done over the last six months, we expect that he’ll reach Stage 5 within the next three to six months. To put it in numeric terms, his GFR (you don’t even have to know what that is) was 29 in the end of December, 26 in the beginning of April and 22 last week. Once it’s under 20, he’s eligible for transplant and once it’s under 15, he would likely need thrice weekly hemodialysis if he wasn’t already transplanted.

Of course this will all be based both on what his labs show and — perhaps most significantly — on how he feels. As of this moment, in true Austin fashion, he feels totally fine. So we could possibly keep this kidney going for up to a year if we’re lucky.

Mark, Austin and I have just returned home from a long “treatment options meeting” with his nephrologist, the dialysis/transplant nurse practitioner, the social worker, and the dietician to walk through our options.

First things first, we simply carry on, no immediate changes except that we’ve added two new meds so he’s taking five or six each evening plus a once monthly shot, which we’ll start tomorrow. He’ll now get labs every month instead of every three and we’ll see the doc in person every other instead of every four.

As soon as his GFR dips below 20, which could happen in mere weeks or could take a few months, we can start the evaluation process to be approved for transplant. This involves a battery of physical tests for him, plus some social-emotional evaluations for all of us to determine how compliant we’ll be with taking meds, going to appointments, adhering to diet, etc, plus some detailed looks at our insurance coverage and whether we have the financial stability to take care of him. Sounds like it can take up to two months to get him officially recommended and approved for transplant.

At that point, we could begin the process of testing potential donors. Insurance usually covers only one or two at a time (depends on the insurance, apparently) so there will be some narrowing down of best candidates based on the results of Austin’s work-up before anyone actually gets tested. The ideal kidney comes from a living related donor between the ages of 18 and 50, though they especially like someone under 35 when giving to a child. And the outcomes for related versus unrelated donors have narrowed considerably over the years so they’re almost equal (though a kidney from a living donor continues to be superior to a kidney from a deceased donor.)

The first matching question is blood type and, as I’ve mentioned before, Austin’s is AB, the universal recipient (chalk that one up for the win). Then they do a series of six tissue matches, the more that match the better (though increasing immunosuppressant drugs can help with a less than perfect match). The tricky one for Austin will be the cross-matching of his blood because he has likely built up so many antibodies due to the countless blood and platelet transfusions he had during treatment. So we expect that to be a fairly major hurdle.

All in all, none of us is particularly distraught by this news as it is happening exactly the way we’ve always expected it would happen.

Except for that one little thing that none of us ever expected: the coronavirus.

You may also remember that back in the day, our main goal was to get him to the point that when his kidney failed he could go directly to transplant instead of having to do dialysis. (No one can receive a kidney transplant within two years of cancer treatment because the necessary immunosuppressant drugs can cause any lingering cancer cells to grow. Hence, our relief when he was declared two years cancer-free.)

Of course, immunosuppressant drugs can also put one at a markedly increased risk for catching things like, say, a mysterious, untreatable, potentially fatal novel virus should such a virus be ravaging the globe.

You can see where I’m going with this?

Depending on where we are with this pandemic (ha, it’s almost laughable to even type those words because Who. The. Eff. Knows???), his doctor is recommending that he “bridge” with hemodialysis and wait to transplant until there’s a vaccine or a treatment or at the very least until things feel safer. We will still do all of the pre-emptive work as soon as he’s eligible so that a donor can be chosen and ready to go as soon as the magic moment arrives, but the reality is that he could end up with some months of thrice weekly hemodialysis treatments.

While far from ideal — and not at all part of our best laid plans — this is not nearly as terrifying as it was to me when he was a baby. Dr. Dell said that kids do remarkably well and can often still participate in their full physical activities even in the midst of dialysis. So that’s encouraging. And, of course, the fact that he will have numerous options for remote learning during either dialysis or post-transplant is (dare I say it?) very fortunate.

So, we move one step closer to what we’ve always called “our next big thing” and we wait out Covid-19 alongside the rest of the world and, in the meantime, Austin keeps riding bikes with his friends and playing baseball and going to in-person school (I hope… this fall?!) and being a normal teenager in an abnormal time.

And we carry on. Because that’s what we do.

Word clouds, identity and self-reflection

The people behind the curtain at Facebook headquarters love to come up with neat little tricks every now and again, algorithms that are supposed to capture the meaning of an entire year or give us a glimpse into a person’s Facebook soul: Click here and we’ll create a photo collage of your last twelve months. Click here and we’ll show slides of your most-liked status updates. Click here and we’ll create a nifty brain-shaped image that shows the words you use most frequently in your posts.

I checked my word cloud twice before sharing it publicly because it sort of made me uncomfortable. The word at the very center, my single Most Used Word of the Year, was perfectly appropriate: the name of my community and the shorthand for my public school district, both of which consume my time and energy as a full-time volunteer. But the words surrounding it didn’t give me the same “oh, those are so me” feeling. The things I love to do — running, writing, voting, traveling — were tiny, if there at all. The things I care deeply about — childhood cancer research, women’s reproductive rights, social justice — also barely visible.

“Know” featured prominently, in the number two word spot. Was that obnoxious? Was I constantly telling people everything “I know” to be true? I think it’s more likely that I start a lot of posts with, “I know I just asked you to do such-and-such, but now I’m going to ask you to do something more.” Or “I know many people have posted about this, but here is another perspective.” Or even, “You know I love this one…” before sharing a particularly appropriate meme.

Of course, there were other good words front and center in my cloud: love is pretty big, as are friends, kids, school. Not as big as they are in other people’s word clouds, but this isn’t a competition, right? Or is it? I found myself deeply impressed with the word clouds of others, even vowing to myself, “Next year, I’m going to use the word love more often. Or grateful. Or appreciate. Now those are good words.” But sometimes the word outraged is good too. And, given the current global climate, necessary. As are words like disgusted, sad or disappointed. Even words we may consider intrinsically negative, like racism, intolerance, or standardized testing could, should and do feature heavily in the word clouds of people fighting to end them. (Yes, I just used standardized testing alongside racism and intolerance, but that’s a post for another day.)

One surprise in my own cloud was the relatively small size of the word cancer. As the mother of a two-time survivor, I’ve spent years advocating and fundraising for childhood cancer research. But my son is well now, incredibly well, and I don’t need to use that stinkin’ word so much these days. No one can argue that that’s not a good thing. But does it mean I’ve given up the fight just because my own kid got better? Am I ignoring the needs of the thirty-six children diagnosed yesterday, today and tomorrow? I know I’m not, as evidenced by my ever-growing fundraising efforts each year (and by what’s in my heart)… but that’s also a post for another day.

Is there some inherent value tied up in the words that appear in our clouds? Do they define not just the language we use but who we are? Do they truly reflect what we think most about, what we care most about?

If so, then most of us who are parents to more than one child are in big trouble. I know I’m not the only mother who had one child’s name feature more prominently than another’s. The daughter of a woman I know was the main, front-and-center word while her son’s name was notably smaller, still visible but tucked off to the side. Did she love her daughter more than her son? No, of course not. But let me tell you, I know this seven-year old girl and she has an enormous personality. I find her very presence exhilarating and inspiring, but I bet her parents sometimes find her exhausting and exasperating. Maybe that’s why she was front and center.

My name of my older son came in pretty large. The name of my younger son was considerably smaller, by about two font sizes (how’s that for a new way to measure worth — by font size?). What does this mean? Does it mean anything at all? My second son, the cancer-surviving one, has been at the center of most of my writing over the years. Perhaps now that he’s well, I’m evening things out. But I doubt it’s that conscious. It could just be that the older one has recently started middle school and embarked on a newfound independence, prompting me to write about him more frequently. Or most likely, it’s that, as the way more chatty of my two offspring, he provides more Facebook-worthy quips.

I can tell from people’s sheepish comments as they share their own word-brains that we all sense the value tied up in this. I had friends whose biggest words were happy, family, love, say, “This makes me so proud!” (and I agreed; their pride seemed as justified as my own guilt and envy). Others, whose clouds featured technical work-related terms, said, “This is terribly boring. I promise I’ll write about more exciting things next year.”

Should we now censor what we say in an effort to create a more Facebook-perfect, representative word cloud for 2016? As a writer, I appreciate the value of a single word, the ability of a well-placed — or poorly placed — word to change the meaning of a sentence, paragraph or idea. But these clouds epitomize words being taken out of context. We are not single terms, we are more than a random computer-generated list of individual words, devoid of any meaning.

As we teach our children, words matter. But word clouds don’t have to.

 

September 11, 2007

On this day, every one of us still thinks back to where we were on that morning fourteen 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 and MLK and RFK assassinations stories. 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 11ths, 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 11th story, one very different from the national story. It starts on Tuesday, September 4, 2007, the day I called the oncology department to ask them 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 the Tuesday after Labor Day, 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 actually 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 likely 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, eight September 11ths 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 fourteen years ago, we celebrate all that was saved on this day eight 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 one. A very good one.

How it all began

How on earth did we end up here? That’s what was running through my subconscious as I attempted to fall asleep in a hospital room on Monday, July 30, 2007, with Austin in a crib beside me. How did this happen?

An excerpt from that, you know, “book” of mine.

I won’t go all the way back, but just know that Austin was a healthy, happy and totally normal little guy for many months. In the end of June of that year, he had his nine-month check-up with his pediatrician Dr. Senders, a legend of pediatric care in our community. Mark and I sat down with this doctor when I was pregnant with Braedan and he sold me after five minutes of explaining his Daily Dose of Reading program. A doctor who spends his free time and money and energy encouraging families to read to their young children? This was my kind of guy. Then he said it wasn’t his job to tell us how to raise our kids, but to “guide and support” us, as no one would know our children better than we would. So much for interviewing three pediatricians—I signed up then and there.

So I brought Austin in for the usual well visit—a few vaccinations, his latest height and weight, and a general check-up. My little guy was in tip-top shape except that Dr. Senders thought he heard a tiny murmur when he listened to his heart. He explained that there could be a small hole in Austin’s heart which he assured me was not a huge concern as they’re relatively common and often heal on their own. I have friends whose children had holes like that which healed so I was genuinely not worried. I’m just not a nervous parent, I do not envision horrid diseases every time my kids cough or hiccup. Dr. Senders recommended Austin see a pediatric cardiologist to determine if we needed to take any further action. He referred me to Dr. Bockhoven, affiliated with Akron Children’s and not our home hospital, because I’d be able to get a quicker appointment.

“Wait a minute,” I interrupted while he wrote down the name and number. “I thought you said it was no big deal. Why do I need such a fast appointment?” I was still calm but not as calm as I’d been two minutes before.

“No, it’s not a big deal.” Reassurance. That’s all parents really need. “But I think you’d like to hear that from a specialist. This is more for you than for Austin.” More reassurance.

So, truly not fazed by this news, I went home and the issue completely slipped my mind. My girlfriend Becky asked me about it a few weeks later and I guiltily realized I hadn’t followed through; I had actually forgotten about it! Proof that I was indeed not worried about Austin’s heart, and the first of many lucky breaks. I finally called and Dr. Bockhoven could have fit me in the very next week except that I was planning to take the boys to my family’s summer house on Lake Chautauqua for two weeks. No problem, they scheduled me for the Monday after our vacation.

We spent two lovely weeks up at the lake. My parents were there, providing necessary help since Mark came only on the weekends. Every evening as I sat nursing Austin on the little second floor porch-turned-nursery, I could hear the sound of Braedan’s endless chatter wafting through the air as he and my mom worked in the yard, he pruning bushes with kid scissors and she gardening without the harsh sun. Braedan, you see, is a constant talker. He’s been narrating our every move since he was one-and-a-half, talking from the moment he wakes up until the moment he goes to bed (and sometimes even in his sleep). I have never met a three-year-old with a vocabulary like his. He uses words like “splendid” and “impressed:” “I am so impwessed you finished that puzzle, Mommy.” He also say things like, “My body is telling me it doesn’t want carrots” or “My body feels like it needs ice cream” because when he was potty-training, Mark and I used to tell him to listen to his body. Ha!

He and my mom are two peas in a pod, they’re so deeply connected. It’s not your regular love between a grandmother and her first-born grandchild; it’s like they’re buddies. They relish being together and never tire of each other’s company. So evening gardening is a sacred activity for them both.

I was struck during our Chautauqua weeks by how quickly Austin was growing: he was pulling himself up to standing and playing independently and acting like such a big boy. Every time I turned around, he’d be into something new, constantly exploring and totally fearless, unlike his cautious older brother. Classic second child, I thought, a fearless second myself. My parents took Austin and Braedan to the small-town amusement park on two (blessedly quiet) occasions and Austin did great without me, happily eating ice cream and watching his big brother enjoy the rides. Life was moving along at a fine pace with no worries.

And I was moving along, already ready for the next big thing. Mark and I had been told in pretty clear terms that having another biological child was “not medically advisable.” I’ve had type 1 diabetes for twenty-one years, you see, and two pregnancies were more than enough burden on my body. I’m healthy, always have been, but I do have a serious disease … something I need to remind myself of every now and then. I love my boys, there is no doubt about that, but I’ve never been afraid to admit that I want a daughter. It’s not just the adorable little girl outfits and decorating a nursery in the colors of the moment (although admittedly that sounds pretty great); it’s the later-on stuff, the growing up, planning the wedding, watching a daughter birth a child. My mom and I are very close. We love being together, we relate and connect and talk each other’s ears off. And I want that. So Mark and I’ve been thinking about adoption. We have a lot of love to share, we can afford it, there’s no good reason not to. Or at least there wasn’t right then as I sat up in my Chautauqua room each night completely engrossed in a new book about international adoption, already envisioning bringing our future daughter home from Guatemala or China.

It wasn’t all rosy though. Austin was fussy at night after having been a fairly good sleeper, but he also grew five new teeth during those two weeks, something I ended up repeating to doctor after doctor and nurse after nurse and intern after intern when they all walked through our door and recorded our history, always including the question, “Has he been in any pain lately? Fussier than usual?” Well, as anyone with small children knows, cutting five teeth is a rather unpleasant experience (for parent and child!), so any unusual fussiness got chalked up to that.

A few days before our trip was scheduled to end, my dad commented on Austin’s belly, asking me if it was always so hard. I looked at it and felt it and agreed that it was slightly distended but it really didn’t alarm me. Babies get that look of big firm belly with skinny limbs when they’re gassy or constipated and my response was simply, “Maybe he has to poop.” Even now, now that I know the truth behind that big belly, I don’t look back and think, “God, I should have known something was wrong.” It just looked full. And I blew it off.

But there is a moment, one that I play over and over in my mind, that happened on our last night there. Mark had come for the weekend, along with our friends and their two-year old daughter, so there was much wine and laughter over Saturday night’s long dinner. It was late and Mark had fallen asleep putting Braedan to bed (shocker, right? Who’s ever heard of a husband failing to emerge from bedtime?). Austin had been up and down, asleep and awake throughout the evening and was very hard to soothe. I had finally given up on rocking him in his bedroom and had taken him outside. We were sitting on the front porch, just the two of us, and I was holding him in my arms as I sat on a swinging chair, and he just wouldn’t stop crying. And I remember so distinctly, like it was yesterday, cradling him in my arms and whispering in his ear, “Austin honey, I don’t know what’s wrong with you.” Oh, I shake my head when I picture the two of us there on that dark and starry night because if I had tried to imagine what might possibly be wrong with him, I could not have even come close. Not even close.

The next day came and as I was packing all our gear and getting everything ready for the car ride home, my mom watched Austin, since Mark and Braedan were already on the road. But my mom, who never calls when she’s babysitting an unhappy child, who never asks for help or complains when a grandchild in her care is missing his own mother, this time, this day, she brought Austin back to me and said she thought there was something wrong. She thought his stomach hurt, because he kept rubbing his side. Yes, that very side that my dad had questioned just a few days prior. So I changed him and nursed him and away we went, leaving our relaxing vacation and our normal lives in our wake.

We got home and you know how it is: there are piles of mail to go through and phone messages to return, laundry to be done and groceries to be bought. Mark stayed home Monday morning because we were about to begin a partial kitchen renovation (how’s that for great timing?) and he wanted to meet with the contractor. Another lucky break since Braedan stayed with him instead of coming to Dr. Bockhoven’s with me and Austin. I packed lunch so we could run a zillion errands afterward, and we headed off for what we thought was a regular old doctor’s appointment. And here’s where we began our dizzying descent into another, much darker, world.

In walked Dr. Bockhoven, the first of many heroes we would encounter in this great saga, who, after one glance, felt Austin’s stomach and voiced concern: “Does his belly always look like that?” He sent us for the scheduled ECHO which happened to include an abdominal ultrasound. And it lasted forever. Really, we were up on that table together for more than an hour. Austin was crying, I was lying there on my side nursing him and thinking how glad I was that Braedan wasn’t with us, and the technician, this lovely older woman, just kept checking and checking and checking. It didn’t quite occur to me until afterwards that she spent way more time looking at Austin’s side than at his heart, the original purpose of our visit. Before we walked out, she asked if I had any other children and then handed me two stuffed animals and wished me a gushing and solemn farewell. I thought she was being friendly or felt bad that it had all taken so long. I didn’t understand that she had just made a terrible discovery.

Dr. Bockhoven, who had been watching on his office computer, met us at the door and led us down the hall past the room where our stroller and lunches and normal lives were waiting and into another room where he pointed to the phone and said that Dr. Senders wanted to talk to me. I sort of chuckled as I picked up, making some stupid joke about this not being routine protocol and nodded my head as he told me that my baby had a seven-by-seven centimeter mass in his belly. (We learned the next day that it was quite a bit bigger but seven-by-seven sounded plenty big to me at that moment.) That moment. The moment that sits like a big fat black smudge down the center of the page that is our lives, dividing everything into before and after. There is no real way to describe it. I cannot separate out all that came next, all that I now know, from my innocence and naiveté at that particular moment in time. I’d like to say the world stopped spinning but it was more like the world started spinning faster and I stopped. “Surreal,” though overused is the only accurate word. I remember Dr. Senders asking me how Austin was right then and I laughed and said he was eating the phone cord and wriggling to get free from my tightening grip. Totally normal Austin behavior. This child? This child has a tumor?

I have to admit, as implausible as it sounds, that I did not think cancer. Well, I’m sure I must have thought it but I did not believe at that moment that my child had cancer. Dr. Sendres had said the word “mass” actually, not tumor. And what the hell is a mass anyway? That’s not necessarily bad, right? . . . Right?

Dr. Bockhoven and I walked back to the room where we had started hours earlier, when we were different people, and he tried to explain things to me. I remained calm, nodding my head, not grasping the severity of the situation or at least not allowing myself to. Dr. Bockhoven was apologetic, sorry that he, a total stranger, was the one to break this news. And, while he no doubt has to share bad news with parents, this bad news is of a completely different nature. Tumor discovery is not his area of expertise. I thanked him time and again because, truly, he went above and beyond. He could have easily sent us back to our regular doctor with a simple, “You should probably have this looked at.” And you know me, I would have waited until Kirk and Sarah’s baby shower was over and the kitchen was finished and back in order before I would have gotten around to making another appointment.

No such pause here. Instead I’d been told by Dr. Senders to go home, pack a bag and check in at the emergency room. “No need to run red lights,” he told me so I tried to sit calmly through them but was getting increasingly anxious by my inability to reach Mark. He was not answering his cell or the home phone, and Mark is outrageously reliable, always there when you need him. I ate my peanut butter and jelly sandwich on the drive (isn’t peanut butter and jelly supposed to make everything better?) and Austin, exhausted from what we then considered a major medical procedure (oh, irony), quickly fell asleep in his car seat. I got home where there was still no sign of Mark despite his car in the driveway, and Morey, our contractor, had questions. Leaving Austin asleep outside, I brushed Morey off and started grabbing clothes out of the enormous pile of laundry to throw into my overnight bag. I was later able to laugh at the outfits I picked; you would have thought I was going on a tropical vacation with the assortment of cute summer skirts I threw in there. I was rushing around trying to remember my glasses and diabetes supplies and feeling so thankful that I actually had a charged cell phone (a total rarity for me, the queen of the dead cell phone). Morey stopped me to say he couldn’t find Mark and needed the dimensions of the fridge we’d ordered, but his words took on a Charlie-Brown’s-grandma-on-the-phone quality, so I interrupted: “Tell Mark he needs to call me. Austin has a, a thing. A mass. Something growing inside his stomach that isn’t supposed to be there.” There: I’d said it out loud. And finally, for the first time, I started to cry. But there was no time for this, so I left Morey confused and guilty as I peeled away.

And lo and behold, right as I reached the corner, Mark appeared, finishing up a run with Braedan asleep in the jogging stroller. I waved him over impatiently and it all came tumbling out, words and sobs and fear and uncertainty. He was calm (Mark is always calm), said he’d bring Braedan to his parents’ house on the other side of town and meet me at the hospital. He kissed me, told me he loved me and rushed home to find Morey running down the driveway to repeat the news.

I called my mom, not expecting her to be home from Chautauqua yet but figuring I could leave a message. Well, she answered and now I had said it three times to three people, “Austin has a tumor,” and it was starting to feel real. The cloud of calm, the swirling strangeness of the morning, the fog I had inadvertently walked into, was starting to lift and I was slowly realizing that this nightmare was happening. This was actually happening. She asked a bunch of questions to which I had few answers and said she’d meet me at the hospital.

Here comes another part that I can now laugh at because it is just so me. Dr. Senders had told me to use the valet parking outside the emergency room, but I, little Miss Independent, I-refuse-to-admit-that-this-is-a-real-emergency, decided instead that I would park in the parking garage just like everyone else. Only the parking garage I chose happens to be located many a secret corridor away from the ER. So there I was, one hand pushing a stroller that held only my overnight bag, with a sleeping Austin in my arm, as I wandered around the basement hallways for a good fifteen minutes, one tunnel leading to another, every sign pointing back the way I had just come. I was down by the loading docks—maintenance guys were driving little tow-lifts around—and nobody could seem to point me in the right direction! I had fallen into the rabbit hole, Alice in my own awful wonderland.

Finally a sympathetic woman walked me from one winding hallway to another and into the back entrance of the emergency room. They whisked us right in—they’d been expecting us—and I was steered to a row of seats in the back to wait for Transport, which was basically someone to walk us back up to what would soon become “our floor” and which (of course) was where I had started out fifteen long minutes before. This is when I bumped into Marissa, a woman I knew from our community Baby & Me many years earlier. A pediatrician doing an ER fellowship, she had taken the call from Dr. Senders describing our case. But it wasn’t until she saw us that she realized she knew me. As Transport arrived and I got up to leave, she gave me a hug and said, “We can treat this. This is one we can treat.” Damn right they can treat this, they better treat it.

It had never occurred to me that it might be something they couldn’t treat.

I was led back upstairs via a much more direct route, and through two sets of doors where washed our hands in between because of “compromised immunology,” a little sign of what was to come. My mom was already there, wondering what on earth had taken me so long, and there were a zillion nurses checking us in and doctors and residents and interns coming through and taking our history and making notes and nodding reassuringly. And Austin, he was just as regular as could be, playful, wanting to get down on the ground and crawl, totally oblivious to the crisis brewing around him. My brother Kirk showed up, all too familiar with that hospital since Sarah had been released just the day before after ten inpatient days to stop pre-term labor. I hadn’t even been over to visit her yet—that was on my list for the afternoon, along with cooking them dinner. Kirk handed me a pen and a notebook and told me to write down the names of all the doctors I’d meet and any questions that popped into my mind. I took it, thanked him and, that night when they’d all gone off to their own safe beds, I started writing. And never stopped.

The rest of the afternoon was a blur. Mark arrived shortly and we stood shoulder to shoulder while a flood of doctors marched through our space, asking the same questions as the one before them. We were transported back to the basement for an abdominal ultrasound. At some point in the evening, we remembered to order sandwiches from the cafeteria. Later, after everyone else had left, Mark and I sat in the dark hospital room with Austin asleep in the crib next to us. We talked in hushed tones, not quite able to finish our thoughts, starting sentences and then trailing off into nothingness.

Dr. Senders appeared, long past the time he should have been home with his own children, for what amounted to a counseling session. But we were so not ready for all that he told us—it was so much more than we could wrap our heads around. He talked about the stages of grief and how Mark and I might each be in a different stage at any given moment and how important it would be for us to be aware of one another’s needs. He talked about Braedan and how we had the power to shape this journey for him, not by being falsely optimistic or hiding the truth, but by answering his questions and providing him with just enough information—and not too much—so he would feel safe. He talked about all the help we’d get from others and warned us not to let coordinating that help become an extra burden. He said we were about to start a marathon, one we hadn’t trained for, and that we needed to pace ourselves and rest on the rare downhill because we were bound to hit spots that would be harder than we could ever imagine. He promised us we would reach the finish line. And I, needing something concrete to hold on to, grasped at his literal words and felt optimistic—I’ve run marathons! I can do this! But I had no idea.

Before he left, he said that that particular day, July 30, 2007, was the first day of the next stage of our lives. Everything after that day would be different than everything that had come before. But we weren’t ready to know that yet.

We had no idea.

Whatever comes

It all started on a swelteringly hot Monday in July. Almost eight years ago. Our boys were 3 1/2 and ten months old. We lived in a different house. We were different people.

Because it changed everything.

In ways large and small, obvious and subtle, it shifted and molded each of the four of us into the people we are today. We will never ever know what our lives might have been, who our boys may have become, what paths we would have pursued had we not been sidetracked by childhood cancer. Sidetracked…? No, that doesn’t come close to describing what it did to our lives. Waylaid. Ambushed. Flipped over, thrown around, and knocked senseless.

Here’s the tally of physical scars: Thirteen visible on his body, some small, some medium, one enormous. One and a half kidneys gone. Twelve rounds of radiation. Fourteen months of chemo. Countless blood and platelet transfusions. One Broviac line, one PICC line, one Mediport. Temporary dialysis. More medications than I can name, some oral, some intravenous, some subcutaneous. An ileus… or two. MRSA and C-diff, at the same time. If much of this sounds foreign to you, consider yourself lucky.

Actually, I consider myself lucky. In every way that we were outrageously unlucky, we were equally, unexpectedly, miraculously lucky.

And today, he had his five-year scans. To check out his kidney, liver, lungs and heart. And everything is normal, unchanged, unremarkable. As we sat in the office with his (new) oncologist at the end of our day, she ran through the list of things to worry about moving forward (who doesn’t need a list like that?): Infertility, heart problems, kidney problems, secondary cancers, cognitive issues, hearing loss, and scoliosis. We went through each, one by one, comparing them to the cumulative doses of his six chemo drugs.

And he should be okay.

The cognitive issues and hearing loss would have already occurred, she expects him to remain fertile, his heart is being monitored already. Secondary cancers would reveal themselves through his regular lab work, but he is well below the level of chemo considered dangerous in that regard. There are no guarantees — and some items on that list (ahem, kidney problems) are not potential late effects of cancer treatment that we worry about, because they are instead obvious and definite parts of his everyday life that we worry about. He still has stage three renal failure. He will still need a transplant.

But what he does not need, ever again, is to be scanned for Wilms tumor. He does not need annual or even biennial checks of his liver or lungs or kidney. Whatever comes his way — and stuff will come — it won’t be kidney cancer. That dragon has been slayed.

By this guy:

My apologies to the other moms whose sons may come home begging for a mohawk tomorrow,

but we were in no mood to say no.

Changes

There’s something about your own kid growing up that makes it feel unique to you, as if no one else has ever had the surreal experience of watching their child — the one they’d rocked to sleep and pushed on a swing — suddenly morph into a tween or a teen or (horror of horrors) an actual adult.

I’m feeling that way with Braedan right now, as we look ahead to his 5th grade promotion ceremony, a mere six weeks away. From this little critter, so eager to walk to his first day of kindergarten…

September 2009

… to the mature and confident (and sports and tech-obsessed) eleven-year old he’s become.

I am so glad he’s spent this six-year journey of growth and discovery at Fairfax School. I’m one of those parents who doesn’t actually think you should shop around for schools. Might sounds strange coming from a former teacher, in a world where all good parents search through every possible option to pick the very best for each individual child. I had fleeting moments of guilt, in those early days, for not putting more effort or thought into it. But I tend to think, unless something’s seriously wrong, you just attend your local neighborhood public school and take what comes. That’s what most parents did in my day. All the kids on the block, with the exception of a few Catholic families, simply went to their public school.

Now there are state rankings and test scores and data to pour over, tours and interviews and “educational philosophies” to consider. Like so much of modern parenting, picking a school for a five-year old requires an advanced degree. And causes undue stress, because no option out there is ever going to be perfect and yet our kids will still be okay.

In our case, we signed Braedan up for the one we could walk down the street to and that was that. He hasn’t always been thrilled with school, he had one year in particular that was less than stellar. But it helped him grow, it taught him he could be resilient and thrive in any environment. And taken as a whole, especially from this reminiscent vantage point, Braedan’s elementary experience has been wonderful. He’s had teachers he loves who he knows love him back. He’s learned an extraordinary amount (way more than I learned when I was a student in the same building). He’s had the chance to enroll in after-school activities that range from drama and racquetball to cycling and skiing. He’s done things few elementary kids have the opportunity to do, like sing on the stage at Severance Hall or spend three nights in the Cuyahoga Valley with his classmates exploring the great outdoors.

And his friends. Well, being that he’s a very social creature (understatement), his friends have been the highlight of it all. And he is friends with everybody. Especially this year, with his grade so deeply connected by their role as building leaders and their shared history, I can think of very very few children he wouldn’t call friends.

I’ve watched him rally his schoolmates around causes he believes in, like Purple for Becca Day or St. Baldrick’s. In kindergarten he was the lone shavee in that building. By second grade, he had a few friends alongside him. This year… take a look.

More than anything else, I’m so happy that he and Austin both attend school in a building and in a district where there is such a high premium on nice. That’s the biggest difference I see between the Heights schools I attended in the 70s and 80s and the Heights schools of today (I guess Heights has changed, after all). I don’t think we were particularly cruel or anything, but we were much more concerned with being cool than with being nice, even by 5th grade. Kindness and tolerance and acceptance are now celebrated and honored from kindergarten through 12th grade. Of course, this isn’t the case for every single child every single day across the board (they are human). But when I hear from parents who’ve moved their kids from local private and parochial schools into Heights schools (and especially into Heights High), one of the things they rave about the most is how nice their children’s peers are.

I’m so proud of Braedan for all he’s accomplished in his first six years of schooling. And I’m so excited for all the incredible opportunities that lie before him as he moves into Roxboro and eventually Heights.

But I still can’t believe that this little LeBraedan is actually growing up …

Beginning

It’s March 20th. The first day of spring. A time that for most of us marks a beginning. A sense of relief (phew, we made it!) and excitement for all that’s to come (it is coming, you know). New growth, lengthening days, all the signs of life returning.

It is not so for the Meyer family. This day, one year ago, marked the beginning of the end. There was new growth alright, but not the kind that anyone wanted. The discovery of a new tumor in Rebecca’s brain and the stark reality — that her parents already knew but had hoped they’d never have to truly experience — that there were no more options. There was nothing to be done.

It wasn’t the end of hope. The family kept fighting, kept searching, kept grasping desperately for any possible way to extend her life. But they knew. One year ago today, on the first day of spring, they knew what was coming. And they knew they couldn’t stop it.

I still have hope. I hope that they Meyers will heal. That each day, they’ll feel a little more joy and a little more peace. That one day, they’ll laugh til tears run down their cheeks and they forget, even if just for a moment, that they’re sad.

And I hope that this is the beginning of the end of childhood cancers that kill. I’m not convinced that we can actually end childhood cancer, though that certainly is the goal. But I do truly believe that we can end childhood cancers that kill. I think with the right combination of funding and technology, brilliant minds and steadfast determination, doctors can achieve that much.

And I also truly believe that we took one step in that direction on Sunday. That the brave acts of the youngest among us will, in a real tangible way, move us closer to that goal.

I’ll repeat some of the things I said on Sunday, variations of which I shared twice, once with the Feldman family in the beginning of the event and again with the Meyer family in the middle.

The children of Fernway School and those of Fairfax School have had to learn some hard lessons in the past week and in the past year. They’ve had to see, up close and personal, how sad and cruel and deeply unfair the world can be. But they’ve also had the opportunity to see how good the world can be. How much kindness and selflessness there is out there. How many people are willing to come to your side in a time of need, to stand by you, hold your hand and bolster you up. How many are willing to do what’s right even when it’s terrifying.

They’ve seen that there is a time for laughter and lightness, a time to honor and celebrate what we’ve lost while still looking forward. They know what it means to sacrifice, to give when you know that you won’t get anything back from it. Every person in the city could have shaved their heads on Sunday and it wouldn’t bring Dan or Rebecca back. But they were still willing to do it. Because they embody hope.

Because they still believe in new beginnings.

Powerful statement

Sunday was wonderful. Sad, happy, moving, chaotic, upbeat, serious, silly. Wonderful.

Thank you to everyone who helped the day run smoothly, so smoothly, in fact, that we finished shaving 170 heads in just over three hours. All of the volunteers, from the hard working barbers to the kids hawking baked goods, made our event the success that it was.

And it was indeed a success! Right now, we have $100,201 online plus another $3,381 in checks that I mailed today. I struggled a bit with our goal this year, after such a remarkable 2014. I knew that having two sick children in our neighborhood contributed in a big way to the $124K we made last year. From Carolyn’s unprecedented $12,000+ shave to the impressive showing at Roxboro Middle School, we would have been hard-pressed to match those incredible earnings. But still, I went big and set our initial goal at $125,000. About two weeks ago, I was feeling a bit disappointed at our mediocre progress (I’m not sure whether I’m an eternal optimist or just plain greedy because there was nothing mediocre about what we accomplished!), but I began debating what to do: Should I lower our goal? To a more attainable and realistic $100,000? That felt so defeatist. I didn’t want to give up! But we simply weren’t going to raise $125K, even I had to admit that.

I finally settled on $111,000, a nice in-the-middle sum that included my favorite number. And I’m glad I did, because I’m fully confident that we’ll reach it. I’ve followed my participants’ pages and their totals are rising every day, especially those of the women who did the full shave. No doubt, they’ve gotten enough stares and questions and shocked responses (“You really did it!”) that they’ve garnered additional donations. All of that, plus the couple thousand we should make from the Dewey’s Pizza School benefit in June and I think we’ll be there.

But once we’re in that room, putting the “community” in Community Center, the money matters less and less. Whether you raised $50 or $3,000, every one of you who set foot on that stage made a powerful statement. To sick children, you said, “I stand with you. You are not alone.” To your peers, you said, “I can see outside of myself. There are things more important than how I look.” To the world, you said, “I am willing to sacrifice on behalf of others, even others I don’t know. I can make a difference. You can too.”

Everyone in that room heard you. Everyone was moved by your generosity, your kindness, and your courage. We all watched our children, the little people who are supposed to look up to us, do things we might not be brave enough to do. And we watched our own peers do the very same things. We witnessed people growing closer, mother and daughter teams shaving, fathers and sons, brothers and cousins and classmates and friends doing something big, side by side. Which is the only way we should ever be when we do something big.

I saw three children, two boys and a girl, pay tribute to their father in the way that he would have chosen had he had the chance. They climbed on a stage and sat with their friends and schoolmates to make the world a better place. And then they went to his funeral. It’s not the way the childhood should work, there’s no doubt about that. It’s far, far from fair. But they did it and it made them each smile. At least a little.

I watched a beautiful young woman shave her head in memory of her mother, with tears streaming down her face. And another young woman, with full pregnant belly, making the world a little safer for her unborn child. I watched a six-year old girl and her mother holding hands with the clippers buzzing above their heads, their eyes on each other, their hearts with their lost friend.

And the boys. I know I spend a lot of time highlighting the girls and the women, but this is a big deal for the boys too. It requires courage and a willingness to stand up and truly be seen, stripped of that thing that makes you simultaneously stand out and blend in. One, who’s shaved with us since the beginning, said that he wasn’t sure he wanted to continue this year now that he’s in middle school. Looks matter to the fellas too, you know. But then (and I quote), “I thought that this might save my future children from having cancer, and I never looked back.”

And that’s why we do this. So that not one single one of those kids who joined us on Sunday, not one 4-year old or one 15-year old, has to hear the words, “Your child has cancer.” And that they certainly never, ever have to hear the words, “There’s nothing else we can do.”

Humbled

I’m gonna say the same thing here that I say every year, because it’s the only thing that deserves to be said at this moment:

THANK YOU.

I am humbled and honored to be able to bring this event to this community and I am humbled and honored by how enthusiastically this community embraces this event. Your eager participation and your incredible generosity, both of spirit and of all things tangible, are beyond measure.

As of right now, between our online donations and the cash and checks we collected today, we’ve raised $98,673. I have no doubt that we will creep over the $100,000 mark in the next few days and even reach our very ambitious goal of $111,000 by the time the fiscal year ends in June. (That means you can keep giving, people!)

There were quite a few highly emotional moments today that I’ll share in the next few posts, but for now, please rub your fuzzy heads, pat yourselves on the back, hug a bald person, and watch Fox 8 news in the morning (8am?) to see Braedan, already bald, and his classmate Joey, who’s shaving on the air, tell you why they do what they do.

I truly thank you from the bottom of my heart.

Until

In the eleven and a half years that Mark and I have been parents, we’ve heard the words “Your child has cancer” on three separate occasions. And each time, it stunned us and terrified us and brought us to our knees.

But every day we know that we’re the lucky ones because we’ve never had to hear the words, “There’s nothing else we can do.”

And the reason for that is medical research. If Austin had been diagnosed with his rare cancer twenty years earlier than he was, I’m pretty confident he wouldn’t be here today. Pretty positive, in fact. But somebody twenty years ago funded the research that saved his life. Now it’s our turn to do the same for some other child, and some other mother, twenty years from now.

I don’t run this St. Baldrick’s event for Austin, although it certainly felt that way in the beginning. Today’s truth is that Austin does not have cancer and, at the risk of inviting bad luck, I don’t believe he ever will again. If I really wanted to do something for Austin, something that would actually benefit him as an individual, I’d be raising money for kidney research. That’s our next big thing, his next big thing.

But this isn’t for Austin. And it isn’t even for Rebecca, though she too is a driving force. This St. Baldrick’s event — and all the money that comes with it — is for the next kid. The one whose name we don’t know yet, the one whose health updates don’t appear daily in our newsfeeds. It’s for the parent who hasn’t ever had to hover over a hospital bed, watching the lines on a beeping machine, the parent who’s never had to write a CarePage update, who’s never imagined holding their dying child. That parent out there who is innocently watching their healthy child, worrying every day worries, celebrating everyday successes, with no inkling of what’s to come.

Because we were all that parent once. Every one of us who’s walked around the pediatric oncology floor with a cup of weak coffee and a dazed look in our eyes was once a normal parent, with normal expectations, normal fears, normal hopes.

So, until fewer and fewer parents have to hear, “Your child has cancer,” and until NO parents have to hear, “There’s nothing else we can do,” I will keep fighting this fight. I will keep running this event, begging for volunteers, pressuring people into parting with their hair, harassing them to raise more more more. I will keep honoring our children, the few we’ve lost and the few we almost lost, alongside the many who are brave enough to sit in the barber’s chair and shave it all off for someone else. I will keep shouting from the rooftops that this is important and necessary and urgent. I will keep fighting.