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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.

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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 most likely 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:

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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.FullSizeRender(22)

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.

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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 that room 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.

 

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 (I’m certainly not). 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.

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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.

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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.

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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.”

I guess people really needed to hear those words: Your work is not in vain, because that post was by far the most viewed and most shared one I’ve ever written. It’s not the best I’ve ever written, but the message undoubtedly resonated with people. We are hungry to know we are not alone in this fight (any fight) and that our advocacy does matter.

In a nice segue to that other cause that keeps me busy, I received a message last week from one of Austin’s old nurses at Rainbow. This is a woman I haven’t seen or heard from in years and I have to admit it took me a second to recognize her name since I knew her best before she was married. But she drew the parallel between that post and my work on behalf of St. Baldrick’s and said that I had long given a voice to children with cancer and their families and that what I attempt to accomplish with my event is, . . . you guessed it, “not in vain.”

Sometimes my success on that front feels small in light of such an enormous problem. The ten or twenty dollar donations I beg for, that one extra shavee I somehow convince to join us . . . how could any of this make a difference when we’re talking about thousands upon thousands of sick children and millions upon billions of dollars needed for research?

But it’s not small. It’s actually quite big.

Here’s what’s big: We have 133 people signed up to shave their heads next weekend. And more signing on every day. And a fair number of them are women and girls. That’s no small feat. Here’s what else is big: They’ve raised almost $50,000 for childhood cancer research. And by “almost,” I mean that by the time I post this, we’ll probably be there.

Here’s another thing that’s big: A grandmother who has signed up to shave her head not because any of her children or grandchildren have ever had cancer. But precisely because they haven’t. She feels just thankful enough and just lucky enough to be willing to do this on behalf of someone else. Someone she doesn’t even know.

Here’s what else is big: Rebecca has been gone for nine months but she looms large in the minds of many. She is so, so far from forgotten. Next Sunday, a cadre of her friends, from her earliest babyhood playmates to the classmates she never had enough time with, are either shaving their heads or cutting their hair in her memory. And she was never even bald. She held on to that crazy mass of curls until her last day on this earth. But still, they will sit up there, these little six-year olds who should never have to fathom such big and scary things, and they will shave their own heads for her.

And yet, it’s not really for her and they all know that. No amount of heads shaved, no amount of money raised, will ever bring her back, will ever make her well. But they will do this anyway. And that is big.

Rebecca’s best friend, the frick to her frack, is a six-year old first grader at Fairfax. She loves princesses, much as Rebecca did, and usually wears her long light brown hair in a braid down her back. I don’t know her all that well, but I feel pretty safe in calling her a girly girl. And my assumption about girly girls is that they like their hair. Or they at least like to have hair. But nine days from now, Ruthie will be bald. Bald. And not only that, but her father, her mother and her four-year old brother will be bald alongside her.

None of that will bring Rebecca back. None of it will make them miss her any less than they do today. But they will do it anyway. So that no other six-year old has to lose her best friend.

And THAT is big.

I never intended to stop blogging after Rebecca died. It just sort of happened. I’d been writing a lot, mostly about her, then summer got underway and when the next big thing worth sharing was our trip to Brazil, and when that trip included the “tragedy” of sitting on a flooded freeway for seven hours instead of watching the USA versus Germany game that we had traveled ten thousand miles to see, I somehow had enough perspective to just not write at all. And then it went on, the summer days turned into fall and inevitably winter, and now I haven’t posted in more than half a year. I almost laughed recently when someone said, “Oh, I read your blog all the time,” and I thought, “Really? All what time?”

But anyway, I’m back. With much to say, including an eventual hilarious run-down of that large and at times infuriating country to the south of us. But right now, what has really drawn me back is that St. Baldrick’s season is upon us yet again. Our 2015 event is well under way, with over 30 participants already signed up and nearly $1,500 raised (record-breaking at this very early stage of the game).

Last Thursday, St. Baldrick’s announced their 2015 Ambassador Kids to the world. I know the date because immediately after reading though their stories, I shared the news on Facebook. As always, they’ve chosen five children and teens from across the country with different types of cancer who represent the spectrum of treatment status — from the child in treatment, to the child who’s “cured,” to the one who’s relapsed, to the one with no evidence of disease. And of course, always, they choose one of the five who has already died. Because that’s the stat we all live with. One in five. Who’s it gonna be?

I cried as I read through their stories, as I always do, but I was filled with admiration for all they’ve overcome thus far and hope for all they have ahead of them. But I was also filled with something darker, a tiny inkling of dread. A nagging thought, deep inside myself, that I couldn’t even articulate at the moment: One in five didn’t seem like enough for this bunch. One in five seemed awfully lucky.

A few nights later, no wait, let me be more precise: TWO nights later, as Mark and I were getting into bed, he said, “I hate when I get these emails from St. Baldrick’s that so-and-so has just died.” “What? Who died?” He held up his phone to show a girl, 12-year old Caroline who I had just read about. What was he talking about? He is clearly confused. I had just met that girl, for crying out loud.

And I scoffed, “No, not her. She’s not the one who died, honey. It was a boy, a little 8-year old boy. I just read the stories.” As if that little fact — “I just read their stories” — somehow protected them. I mean, she couldn’t possibly be dead today if she wasn’t dead two days ago when *I* read her story? She’s not the Dead One. He is.

Well, they both are. This girl, Sweet Caroline, forever 12, was announced as an Ambassador Kid on Thursday and died on Saturday morning. Two days of fame. Two lousy, measly days.

Being a St. Baldrick’s Ambassador Kid is a fairly big deal. It’s special. Suddenly, there are thousands and thousands of people following your story, shaving in your honor, wishing you well. It doesn’t actually change anything, it doesn’t magically make you healthy. But it’s still special. And she should have had a chance to enjoy it. To revel a little in her own celebrity.

She should have had a chance to enjoy so much. And to revel in her own ordinary life.

But she didn’t. And this is why we do what we do. This is what all the hoopla is for. All the green hair, the fundraising competitions, the shamrock cupcakes, the endless emails. It’s so that kids stop dying.

We may never get to use the word “survivor” to describe Becca Meyer. But let me tell you, that girl is surviving.

Yesterday, today, and, we certainly hope, tomorrow, she is living a life so filled with love and laughter and friendship and family that some may be rightfully envious of her. She is alive and she is thriving — running, jumping, playing and doing it all with a full-sized dose of spice and sass.

Take today, for instance. Today was Purple for Becca Meyer Day at Fairfax School. The Student Council created a long list of Spirit Days for the month of May and Braedan’s suggestion was this one. It was carefully planned for a Thursday because Becca’s at a hospital in Pittsburgh every Monday, Wednesday and Friday morning. I knew that Braedan was nervous that people might not participate, or that it would only be the girls in purple, or that (worst fate of all) Becca wouldn’t notice. He wrote his own message to read over the PA system on Wednesday afternoon reminding people of the day and why it was important, closing with, “It doesn’t matter how you look because you’ll be doing something good for someone else.”

We found purple t-shirts in the bottom of my kids’ drawers and were all ready. And then Becca threw up yesterday. On her car ride back from Pittsburgh. Which could be a sign that the time had come, that the end was about to begin. As I put the kids to bed last night, I debated whether I should tell Braedan that tidbit of truth to prepare him for the possibility that she might not be at school on her very own day. But he was riding high after a super successful trumpet quartet with three of his best friends, and I was holding tight to the hope that Becca’s was just a passing sickness, some normal explanation for normal vomit with a normal outcome.

Well, she was at school today, in head to toe purple, as were many of her schoolmates. I was most impressed with the number of kids, boys and girls alike, from kindergarten through fifth grade donning that royal color. And Braedan was most pleased. And — all that really matters — Becca was most pleased. And full of spice and sass.

At dismissal time, she marched out the door arm in arm with her best friend since birth, both purpled to the hilt. They encountered a beloved teacher in our building, who had sprayed her hair purple for the day, and she pointed it out to Becca, who promptly stuck her hands on her hips and said, with a personality bigger than her poofy princess dress, “No. You. Didn’t. That’s PINK!

Today, she is surviving.

I lied to Kat Meyer. It was early last fall, after the kids had gone back to school and her family was briefly home in Cleveland during their months-long stay at the Children’s Hospital of Philadelphia. I told her, expert that I was in such things, that the year ahead would be exhausting. It would be sad, hard, frustrating, terrifying, surreal and completely and utterly exhausting. But then it would be over. They would pull together and they would do this hard thing and then they would be okay again.

And there was my lie.

I only said it because I believed it was true. That first critical surgery, where doctors cut open the skull of her five-year old daughter to remove a “bad rock” from her brain, had been successful. And so they would move on, going through the miserable motions that are childhood cancer treatment, and then they’d get on with their lives. Becca would get on with her life. Or so it seemed.

I spoke with more truth recently, after they discovered her cancer was back and treatment options nearly nonexistent, when I told her that she had entered a realm I knew very little about. Because, while I’ve heard the words “Your child has cancer,” on three separate occasions, I’ve never heard the words, “And there’s nothing we can do about it.”

Quite honestly, I don’t know a thing about death. Not in any real sense at least. And yet I’ve become this de facto expert, helping people prepare their children, helping people grieve and heal, planning and organizing and gathering, comforting the mom whose husband died suddenly, giving advice to the friend whose mother is getting close.

But I haven’t experienced any of it myself. I’ve never lost anyone. Besides my grandparents, I haven’t lost my parents or my in-laws (nor even had a significant scare). I’ve never lost a cousin or a sibling or even a friend. I’ve barely experienced death at all.

I have glimpsed it though. Like a shadow lurking behind me. I’ve felt it there, hovering over my shoulder, slipping just out of view when I turn to stare it straight in the eyes. It’s been present enough so I can smell it and almost taste it in my mouth. I’ve had those words, “Palliative chemo” uttered to me, but only in response to a What If question (“What if this treatment protocol we’re about to start doesn’t work?” . . . “Palliative chemo.”) I smelled death around me for the sixteen days back in May 2012 when we thought his cancer had come back for a third, and final, time. Just enough so that I’ve vacillated between two equally horrible extremes: One in which, in strange moments of calm, I could almost allow a slow but steady acceptance to seep through me. I could say to myself, “Okay.  This is coming. This is really and truly happening. And we will make it the best, most peaceful and most comforting death ever. And then we will pick ourselves up and we will move on. We will be okay.” And as soon as I’ve dared to allow such traitorous thoughts into my mind, they are knocked out with pure and absolute refusal. This thing will not happen. I refuse to allow it to happen. “No, you will not take my child. I WILL NOT let this happen. I will fight, scream, beg, plead, claw my way to him and I will hold on with a grip so tight that nothing, no one, will be able to pry him from my arms.”

I imagine Kat and Eric go through that particular roller coaster ride several times each day now, as they watch their seemingly healthy daughter run around the playground, perform in the kindergarten concert in full princess attire, squabble with her friends over toys. And yet they know, they know what is coming. What might strike on any given day. Death is lurking in the shadows, hovering over their shoulders. And if they fight it, refusing to allow it to come into full view, then I wish them all the strength and luck in the world. And if, given their sad reality, they accept their fate with broken hearts, then I wish them all the strength and luck in the world.

 

 

 

This might be part one in a series titled Death in the Age of Facebook, about which I have a fair amount to say.  But let’s start with this:

Positive thinking does not cure cancer. A good attitude will not help you survive.

It’s a lovely idea, of course, one that makes us feel like we have a tiny bit of control over our destinies. Be strong, keep your chin up, and this too shall pass. Only that’s not true. And not only is it not true, but it’s harmful and hurtful to those who don’t survive, those whose cancers simply can’t be beat with a smile and a sunny outlook.

Look at the language we use around cancer: This person “succumbed” to the disease, while that other one “overcame” it. Patients are warriors fighting a battle that requires strength and courage, a willingness to charge forward and face any challenge, no matter how terrifying and no matter how futile.

There is a lot about Facebook and social media that is wonderful when you’re faced with a crisis. You’re able to connect with others who’ve experienced what you’re going through, you’re able to share information in an honest and direct way with large numbers of people, and you’re able to draw strength and love from the strength and love of those around you. The online response, even if it’s just the click of a Like button, can be overwhelming and heart warming. It’s a sign of the invisible thread that ties us all together, caring about one another, wishing each other well.

But it also gives us a glimpse into how differently people handle the tragedies that befall us, tragedies like death sentences for five-year olds. Now, I know these are treacherous waters to wade through, that no one truly has the right words, that no one can take away the pain and suffering of the family, no matter how badly they may want to. And I know that any of us might say the wrong thing at the wrong time, in a misguided attempt to be helpful.

But one thing that I wish no family would have to bear is the idea that they should “keep their heads held high” and not “give up.” As if they themselves, their grief and their despair, are somehow responsible for their lack of options. Sometimes, as horrid as it is, there simply are no options. Or no good options at least. Now I’m not saying give up; I believe in holding on to hope until the very last second. But be sad. Let your head hang down and cry when you need to because this is devastating. There is no “chin up” attitude that can bolster a family faced with this reality, no “rah rah” mentality that can keep death at bay.

Although I sure as hell wish there was.

 

 

Last night, after I finished entering in all the cash online and had made my final calculations, I was so excited to announce that our event raised a grand total of $112,793. Feeling satisfied and proud, I was eager to share. When I read the news of Rebecca Meyer’s latest MRI.

And it wasn’t good.

And sometimes it feels like we just don’t do enough. Like we just can’t act fast enough. All those thousands of dollars raised in her name and in her honor and what good will it do?  Sure, it may save some other child down the road and yes, of course, that’s noble and right and ultimately what we all want, but at this moment, for this child, for this family, they just want her. They’re not thinking about the new research we’ll get in two years or five years or ten years.  They need it now, they need it tomorrow.

You may be scratching your heads and thinking back to Sunday’s event and wondering, “Wait…was she there? Did I see this sick girl?” Well, yes, she was there. But no, you didn’t see a sick girl. She was well. Happy, vibrant, head full of hair, face full of light. She was very, very much alive.

She’s here last Friday, in pink head to toe, sticking out her tongue like any five-year-old should:

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And here again, on Sunday, watching with glee as her older sister shaves her head in her honor:

And again, with her bald schoolmates around her (goodness, these Fairfaxians like to stick out their tongues, huh?):
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She is alive, goddammit, and she deserves to stay that way.

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