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When I was a freshman in high school, I took an introductory journalism course. That spring, a girl I’d known from my neighborhood went with the Heights instrumental music program on a trip to Asia, where she contracted a rare lung disease, which landed her in a coma upon her return home. She died on her sixteenth birthday. I wasn’t yet experienced enough to be on the official newspaper staff, but this girl and I had lived on the same street and had gone to the same school since our earliest elementary days, so when nobody stepped forward to write the article on her life, I did.

I sat in on the counseling sessions the school had set up for her friends, furiously scribbling down the conversations between her closest friends and her boyfriend. Then, accompanied by my mom because I must have been nervous, I walked over to her family’s house and sat at a picnic table in the sideyard to interview her parents and her younger brother. It was, to say the least, a fairly intense experience for a 15-year old, as I dug into their grief and then had to craft a story (with a strict word count) that captured all she had been to those who loved her. I was proud of the story I submitted, even though the one that was eventually published had been sanitized and read a little more news article and little less human interest.

But the significance of that experience is not lost on me as I’ve now spent years upon years writing about darkness and sadness in a way that I hope brings a sense of light and comfort to people.

Today, I was asked to write the article for the Heights Observer on Becca Meyer, who died on Saturday, less than twelve hours after turning six.

Sometimes, in our darkest days with Austin, when we thought he might not survive, I would wonder what my life would have been like if our second baby was conceived a day earlier or a day later than Austin had been. Or even a minute earlier or a minute later. What if I’d gone to the bathroom, gotten a drink of water, fallen asleep first and this child with these specific genes never came to be? Would we have been spared our great sorrow, our worst fears, his tremendous suffering? But every time I allowed myself to think that thought, it was immediately replaced by the full and unwavering knowledge that I would take Austin, with all his physical faults and with all the suffering that we did endure and that we may have endured. I would always still choose to have had him, even if it was only for a short while.

I have to imagine, that because Becca was adopted, her parents have had a similar and yet powerfully different set of what if’s to ponder. What if there was one family ahead of them on the list? What if some other child had been born on June 6 instead of June 7 and they’d been called for that one? What if her birth mother had decided otherwise? How different would their lives be? Would they be spared the unthinkable grief they now feel?

But I know without hesitation that if they’ve ever allowed such questions to run through their minds, they are immediately replaced with two unwavering truths.

One: They would always take the joy of having known this spark of a child, the gift of having loved her and been loved by her, … for the enrichment of their own lives, they would always choose Becca.

And, more importantly, two: If the child we knew as Rebecca Alison Meyer was destined to be in this world and if it was written in her genes or in her stars that cancer would claim her life, then who better to entrust her short life to than the Meyers? Who better to surround her with love and laughter and friendship and all things princess than Kat and Eric, Carolyn and Joshua? Who better to hold her, guide her, sing to her, dance with her, kiss her and love her than the family she was given? How lucky were they to have been given the incredible honor of shaping the course of her too short life? How lucky were they to have had the opportunity to fill it with so much joy? How lucky was she?

Loving her so well and loving her so much may well be the greatest burden of their lives.  But I do not doubt that it is also their life’s greatest blessing.

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I suppose it should go without saying that I am a huge fan of love and would never have meant to imply with my “harsh words” that I don’t think it’s a useful and valuable thing to offer up to those in need. It most certainly is.  Offer it up, please, in huge quantities, to all those who need it (which is, technically speaking, everyone). Give it freely and frequently and with abandon. It may not cure cancer or any other medical malady, but it surely is good and necessary. And I would venture to say that, while strong medicine, good doctors, and aggressive treatment — coupled with luck — saved Austin, it is love that saved the rest of us.

I’ve put that another way before which holds true still and that is this: while doctors saved Austin, nurses saved the rest of us.

Six years and three weeks ago (exactly), I sent out an email to friends and family informing them that Austin had been diagnosed with cancer. I was upbeat and hopeful, providing as many details as I could in that moment, all tinged with a misplaced sense of optimism for what we were about to endure.

My inbox was flooded almost immediately with replies conveying that same hope and optimism, all telling me that we would beat this, we were so strong, Austin was lucky to have us as parents to guide him through this, blah blah blah. Everyone meant well and I thoroughly appreciated their words, but after a while, the messages all blurred into one. Except for the singular and unblurrable response from my college friend in London, which read, “Fucking hell, Krissy, this fucking sucks.” And I laughed and I cried and I saved that message in cyber-eternity because it was the only one that captured what I was really feeling, what my heart knew but my mind couldn’t yet accept: this fucking sucked.

I have used those words many times over the past six years and three weeks . . . too many times, in fact. I have handed them over with as much kindness and comfort as I could muster to a friend whose mother was diagnosed with cancer too young. And another whose daughter was diagnosed with cancer too young. And to the friend who deserved the words most of all after her daughter was killed in a freak accident. And the woman whose husband died of a heart attack after an evening bike ride, leaving her a widow with three young children.

And then I used them yet again, just a few days ago, in a message to a woman I’ve known since Braedan was just a few months old, whose five-year-old daughter, about to start kindergarten at Fairfax, was diagnosed with a brain tumor instead.

Because, fucking hell, what else can you say to that?

I’m not going to tell you their whole story because the husband/father is doing that himself here, so eloquently I’m almost embarrassed by my own blabbering vulgarity. But not so embarrassed that I’ll stop, because if you think I’ve used harsh words before, they’re about to get harsher. I’ve been following their story pretty closely over the past week and have read through all the comments that appear on both parents’ Facebook pages. And they’re filled with hope and love and fervent fervent wishes for the best possible outcome. They are lovely and moving and raw and I’m sure bring some small but necessary bit of strength to the parents. But they are also filled with a falsehood, with a piece of conventional wisdom about illness that gets bandied about as if it’s undeniable truth and it is not.

It is this: that love will conquer all. Time and again, I have seen well-meaning people tell their downtrodden friends that their sick family members will survive because they are loved. Love will save them. Love is more powerful than anything, even, say, cancerous tumors.

I used to like this idea. I believed it and lived it myself the first time through. This was something I could do. I could love Austin back to health, that was one thing I could control. I distinctly remember strolling him outside the hospital one October night, mere weeks into our years-long journey, and thinking that my pure longing could actually save him, that my intense wanting, my unbreakable desire to keep him alive would do just that. And then I realized, with a jolt to my heart, how wrong I was.

Because they fell like dominoes around me. Those children who were nothing if not loved. Ashlie, Ariana, Emily, Seamus, Dylan, Olivia. Did I really think that if their mothers had wished a little harder, if their fathers had loved with greater intensity, if their circles of friends had prayed more frequently or more fervently, that those children would have somehow survived? That is not how it works. Love isn’t enough. It helps; it makes the long days and weeks and months more bearable and much more pleasant. But it doesn’t save lives. It would take you mere minutes with Ariana’s mother to know that her love should have saved a small country’s worth of children. She loved her daughter beyond measure. And Seamus’ parents . . . are you kidding me? There could be no bigger love for a child.

But it didn’t matter. Because it’s not love that saves. And goodness knows, it’s not lack of love that kills (nice message to send to those parents, huh: if only you’d. . . ?). It’s not a question of worth or value or who deserves what. Because every parent deserves to send her sweet child off to kindergarten healthy and whole. And every five-year-old deserves to go.

So, no, it’s way more random than love. It’s just luck. Plain old luck, good or bad. Which is way out of our control.

Fucking hell.

There are so many reasons we love St. Baldrick’s. Of course, the very necessary research they fund is the main one. But these events and the shavees give us so much more than that.

Here are some of the gifts, large and small, we’ve received from our involvement with St. Baldrick’s this year.

There are tangible gifts, actual boxes that arrived in the mail and were excitedly torn open:

And then there are the gifts that could never pack up and mail, no matter how big the box. One middle school boy, who’s shaving at our event, is honoring his aunt who died nearly one year to the day of March 11. He originally set a goal of $500 but, upon seeing the reaction of his friends and family, quickly raised it to $1000 and had now increased it to $1,500. The husband of one of my best friends is also shaving, as part of Team Gallagher at AJ Rocco’s (along with Mark and my brother Kirk). This friend said he would happily have donated $1,000 on his own if he could, but since he can’t, he’ll raise it instead. And raise it has, in a mere 24 hours.

And there are more gifts, sometimes in place of gifts: One of the six shavees from St Paul’s Cooperative Preschool had his 5th birthday party over the weekend and requested donations to St Baldrick’s in lieu of presents.

The youngest shavee in our group, my four-year-old nephew Van, has spawned an event of his own. The staff at his day care were so inspired by what he was doing that they’ve organized a pancake breakfast to be held the day before our head-shaving, to which all the families have been invited. Austin and I will attend also and I will give a short talk. They’re making faces on the pancakes so they’ll resemble perfectly oval bald heads. All the money they raise, which they predict could be $500, will be donated on Van’s head in honor of his effort. Austin loves pancakes and, as you an see from his St Baldrick’s Valentine (which was posted on their Twitter feed last week), he loves bald people too:

There are currently nine students from Fairfax Elementary shaving their heads alongside Braedan, seven of them his second grade classmates. Last night at dinner, he was asking how much each kid had raised and I told him that some of them were still just beginning and didn’t have much or any money yet. Without missing a beat, he said, “I think I should give some money to them. Maybe one dollar each.”  So tonight, my sweet charitable eight-year-old, will hand over some crumpled dollar bills (and a lot of coins) while I go through every page and place single dollar donations with my credit card. Love that boy.

And then there’s Mrs Glasier, fourth grade teacher at Fairfax, who set an extremely ambitious goal of raising $10,000. I will admit that I tried to talk her down to something more easily attainable, but she wouldn’t hear it. She’s only a small way there but this is a determined woman and I trust that she will keep asking, begging, pleading, cajoling and threatening until she reaches that goal, even if it’s not til after the event.

Another teacher in on the act (though not in the shaving kind of way!) is the boys’ preschool teacher who has insisted on going through and making a small donation on the individual pages of each current or former student and their siblings. I has suggested she could save a lot of time by making a few bigger donations, perhaps one to Team Austin and one to Team Fairfax, but no, she said she wanted each child to see their amount go up and see her name in their online lists of donors. She has spent years working with young children, after all, and she knows them well.

There’s another woman shaving at our event alongside her young daughter, who emailed to see if I knew any child who has or had cancer who might want to help shave her head.  Huh, do I ever! I told her I couldn’t guarantee the quality of Austin’s head-shaving skills but she didn’t bat an eye (this obviously isn’t for the vain).

So, we receive these gifts large and small, a dollar here, a dollar there. One more shavee registered today and another tomorrow. One more sign of love and support for us and for all the others who’ve traveled this road before and all those who will travel it after us. It all adds up to something big and powerful. Actually, it all adds up to $5 million, raised in record-breaking time. Check out today’s St. Baldrick’s headlines. Recognize anyone underneath all that hair?

And then take a second (four minutes actually, but it’s worth it) to watch these two brothers. The wisdom of kids ….

 

 

 

Yesterday was an anniversary I will never manage to overlook: nine years since I married someone who is pretty much the best guy in the universe.

Over the weekend at my reunion, I spoke with a couple different people who made comments like, “I don’t know how you did what you were able to do,” or “I never would have had the strength to handle childhood cancer like that.” I’ve heard these things before, since the very beginning of our journey four years ago. And I have continually insisted that I don’t believe them. I think that most of us have a well of strength deep within that rises to the top only when needed.  None of us walks around with our full force on display, in an I-can-handle-anything-that’s-thrown-at-me kind of way. But we step up when needed, taking the worst of life and making it through. Because we have no other choice.

But I will admit that I do have something unique, one extra benefit that made handling such a massive trauma many times easier. And that is Mark. Having a steady partner by my side, one who never kept score (how many hours have I spent at the hospital versus how many hours have you), one who reminded me, without judgment, to focus on Braedan when necessary, one who was quietly realistic, forcing me to look at ugly truths while holding an acceptable amount of hope at the same time, … it made all the difference. There is no way I could have done this without him. And I’m not just saying there’s no way I could have done this alone; that’s obvious. But Mark is not interchangeable with any other good-enough husband. There is no way I could have done this without Mark.

Of all the strength I showed, and continue to show as the public face of Austin’s sickness, only half is mine. The other half was handed to me by the man I love most.

Happy nine years, honey. May the next nine be a heck of a lot easier.

There were many years when Mark and I planned our springs and summers around weddings. Weddings of his friends, my friends, family members. Weddings in Cleveland and Chautauqua, Chicago, Florida, New Orleans and Boston. And then suddenly, right when we were complaining about too many weddings, they stopped. We got old, I guess, and as many friends were getting divorced as getting married.

We went to a wedding this past Saturday, our first since my brother Eric’s when I was (very) pregnant with Austin — a balloon of a bridesmaid, if ever there was one.

So I was very pleased when we were invited to my friend Ann’s wedding in Chautauqua. This is the Ann who was my long ago summer friend who reappeared in our lives on our second day on the pediatric oncology ward as Austin’s nurse practitioner. We quickly caught up on the years that had separated us, and she became a solid and irreplaceable fixture in our cancer story.

She had warned me ahead of time that Ariana’s parents would also be at the wedding. “Sweet Ariana” who we knew in the first few months of Austin’s treatment and who has been gone from this world for almost four years now. I hadn’t seen her parents since Ariana was still a patient on the floor but think of her and her mother nearly everyday, so was very excited to see her. I knew this was bound to be an emotional night but thought I would be okay. And then I first glanced her across the room, looking ever more glamorous than the sweat-panted version I used to know, and immediately got choked up. We waved to each other across the room but couldn’t get close enough to say hello as the ceremony was about to begin.

And then a beaming Ann walked down the aisle to her eagerly waiting groom, and the ceremony began. And oh, begin it did. They had the traditional we-wish-to-remember-these-people-who-are-no-longer-with-us-today: Grandma Mildred and Grandfather Harry, Great Aunt Beatrice and this ancient person and that ancient person and then — you’d think I would’ve known it was coming — and then, “and sweet Ariana.”

Oh my god, I almost had to walk out of there. I didn’t dare look up at Anna Marie — that would have been the end of me. I cried behind my hand until Mark pulled a tissue out of his pocket (“I thought you might need this, honey”).

The evening wasn’t all tears. There was laughter and hugs and lots and lots of dancing. It was so special to get to catch up with Ariana’s parents and hear about their older son and their new younger son. Although I cannot truly fathom what they go through each day, I do have an inkling. I see myself and Mark in each of their (sometimes opposite) ways of moving forward. I was able to freely ask the questions like, “What do you say when people ask you how many children you have?” (she says three, he says two) and “What did you do with her bedroom?” (kept it the same for a good long while, but often had to shut the door, and finally made it the new baby’s room).

I know Anna Marie wants joy in her life — and has joy in her life — for her own sake, for her husband, for both her children and for the memory of her oh-so-special daughter. But I know she has pain in her life too, every single day.

All in all, it was a lovely evening, for so many reasons, not the least of which was Ann’s palpable happiness. I spent several hours on the dance floor in my too-high heels. In the recent berth of weddings, I haven’t had many opportunities for dancing, but it does feel good (except for, you know, my feet). I even managed to get Mark out there for one slow song. As we swayed to usual wedding band fare (“I Can’t Help Falling In Love With You”), I thought back to my brother’s wedding in 2006 and marveled aloud, “Is this the first time we’ve danced with each other in almost five years?!”

“No honey,” he said with certainty. “No, it’s not.”

Oh right. It’s been almost four years but there was that night, our fifth wedding anniversary and our fourth night of more than one hundred sleeping on the pediatric oncology floor of the hospital. We had take-out pizza and wine in plastic cups, which we hid behind our backs like kids at a high school party every time a nurse walked in the room. We watched our wedding video and we danced to Ben Folds’ “The Luckiest,” two images of one couple: The first in miniature on the television screen, a fairy tale bride and groom dancing under the stars with the moon reflecting on Lake Chautauqua behind us. The second, in stark contrast, leaning against each other in a hospital room, silhouetted against the green glow of an IV pump, sick baby asleep in the cage-like crib beside us.

Sure didn’t seem like a fairy tale in that moment. But I’m still holding out for that happily ever after.

One of the features on WordPress allows me to see which pages on my blog people visit and each day, there are at least several (presumably new) visitors who read the “About Krissy” page. So I just looked at it and, wow, that sure can’t help anyone! It actually says, in those few brief paragraphs, that Austin has “been in remission since March 2008.” Humph. I wish.

So, for the sake of any newcomers (or any confused old-timers), I’m going to give the Cliff’s Notes version of the past two-plus years, divided into three rounds.

Round One began on July 30, 2007 when Austin was diagnosed with bilateral Wilms’ tumor, cancer in both his kidneys. His treatment lasted eight months and included four abdominal surgeries, the removal of his entire right kidney and 40% of his left, and twenty weeks of chemotherapy. The details of that round are summarized on the Austin’s Story page, which is a seriously shortened version of what I wrote on his Carepage between August 2007 and March 2008. Excerpts from those months can be found interspersed throughout this blog as well, especially in this post.

Round Two coincided with the launch of this blog and took place in March and April of 2009. After thirteen glorious cancer-free months, a CT scan revealed a new mass floating in his left abdominal cavity (not in the kidney itself). A biopsy confirmed that it was indeed a Wilms’ tumor and we were left reeling, certain that his cancer had recurred.  The tumor was removed in yet another major surgery after which we learned that it was actually an old tumor, and instead of a dreaded recurrence, this episode was labeled the much vaguer (but much better) “residual cancer.” The whole thing lasted a mere three weeks and we suddenly found ourselves back where we’d started.

There was another intermittent event between Rounds Two and Three: In October and November of 2009, we began watching yet another shadow, worried that it might be cancer and necessitate the removal of that left kidney. We thought we had resolved the issue when, lo and behold, the shadow changed drastically which brings us to the present, Round Three.

Round Three officially began in December with the decision to go in and attempt to remove this new tumor while also hoping to salvage what remained of the kidney. I won’t go into all the nitty gritties because they’re posted here throughout December, but the surgery was successful in terms of the kidney but not so much in terms of what it showed us about the cancer. Austin had indeed relapsed, his cancer was back and more vicious than ever. After some gut-wrenching back and forth decisions about whether or not keep the kidney, Austin began another protocol of chemo and radiation, which we are currently partway through.

It’s all here, in a crazy and jumbled fashion. These posts are filled with good news and great news, bad news and horrible news. There is hope and laughter and tears and fear and love and lots and lots of living.

We are ever-so-slowly making our way through the boxes and putting together one room at a time (or in my case, putting together a tiny corner of one room and then one tiny corner of another, as every time I wander away looking for a screwdriver or curtain rod, I end up getting sucked into something else somewhere else — and usually forgetting said screwdriver or said curtain rod). Anyway, I have pictures of the boys’ rooms to share, the colors and themes of which were chosen by each boy himself.

Here is Braedan’s blue outer-space bedroom:

Learning from the master

The highlight of the house: a connecting door to Austin’s room

And here is Austin’s red transportation-themed room:

That magical door again

As always, just a blur of motion

Their coordinating red and blue rooms remind me of one of my very favorite children’s books, I Love You The Purplest. The story answers that question that all parents of all time have heard from their children, “Which of us is your favorite? Who do you love the best?”

In this tale, a mother and her two sons head out in the evening sun to go fishing on a pond near their cabin. The one son is cautious and kind, slow and hard-working. The other is quick and lively, running and jumping about. They seek their mother’s approval on each page: Who dug up the best worms? Who’s the best fisherman? And her answers appease them both: “Why, you have the most worms and you have the liveliest worms.” Or, “You caught the most fish, but you were patient and caught the biggest fish.”

In the final pages as she tucks them into bed, each whispers in her ear, “Mama, who do you love the best?” And she answers one, “I love you the bluest.” Blue like the calm summer sky, blue like the ripples gleaming on the lake. The other she loves the reddest. Red like the flames of the fire, red like the hot desert flower.

So, tonight I will tuck my sensitive, gentle Braedan into bed in his blue room and my passionate, fiery Austin into bed in his red room. I love them the purplest.

I know you all want to help. Every day, many times every day, people lament to me that they feel as if they’re just not doing enough. You beg for tasks needing completion or take my packages to the post office when you weren’t really planning on going (despite saying you were). You go quietly to my third floor to wrap my Christmas presents or bake Braedan a beautifully decorated basketball cake.  You send cards and food, well-wishes and hand crafted stars from all across the country.

It is all lovely and it makes us feel loved. It does not, however, change what is happening. Nothing that any of you can do or send or bake or buy can change what is happening. You certainly make it easier, don’t get me wrong. And it is definitely appreciated. You make our lives more manageable and less stressful by providing us with our basic needs and many many of our not-so-basic needs. And I know, because I too have watched families go through this struggle, that it makes you feel better to help in some small way.

The small way that helps me the most is the words that you give me in return for the words that I give you. I read every email message and Facebook comment and blog comment you write, often many times over. You preface your words by saying you fear they’re not enough or you hope you don’t say the wrong thing or you wish you could do more. But those small tokens of love and encouragement, hope and support and well-placed (and much-needed) humor are enough.

Please know that I take your words and I carefully wrap them up and store them within me. And then I pull them out right when I need them most and they give me strength. Which, in turn, gives us all strength.

My mom has my Caring Today article sitting out on her counter to proudly show to anyone who walks in her house (we moms are all the same, aren’t we?). She must have read it yet again the other day because she commented on how she too interacts with Austin “with a great deal more reverence.” It’s hard not to. Even though this shadow may turn out to be nothing, even though this episode may not alter his life’s trajectory, all those “what if’s” come rushing back and a new level of care, of intensity, of reverence colors all of our interactions with Austin.

Take art projects, as one small exmaple.  If you’re the mom (or dad) of a kid in preschool or elementary school, you are definitely flooded with art projects.  They come home every day stuffed into backpacks and folders, some special, some scribbles. I try to weed through them and save only those that really capture a time or ability in each boy’s schooling, while sneaking the rest into the bottom of the paper recycling bag. Braedan’s are filled with increasing detail and lists of all the words he can spell (even if those words are in no way related to the drawing they accompany). Austin’s are mostly indecernible markings in a single color.  But lately, I’ve found it more and more difficult to throw away any of Austin’s work. There is this tiny voice in the back of my mind warning me that I might someday regret not having every shred of evidence of his being.

I know that sounds morbid and I assure you that we are not moping around awaiting his demise. But that sense of vulnerability is undeniably present and hard to shake. But it is the boys themselves, and especially Austin himself, who force us to move forward and live life in the present. Austin is a thoroughly alive child, intense in ways both positive and negative. He can get violent, especially when he’s frustrated, and is both a hitter and a biter. Poor Braedan, of course, bares the brunt of his brother’s angry outbursts. But he is equally intense with his affection. When he wants to show his love, it’s as if he simply can’t get close enough to you. He wraps himself around me so tightly and snuggles up, nudging in closer and closer until his body and mine are practically one. He gives squeezes and hugs, kisses and nose rubs, over and over and over.  With his arms snug around my neck, he’ll even pat my back  like he’s soothing or comforting me.

Which I suppose he is.

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