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Some of you may have seen this yesterday when I posted it on Facebook, but it’s worth a click to enlarge:
It provides us all with some fairly good reasoning for why we need to fund pediatric cancer research. Not that many of us actually needed that reasoning, but there it is.
But you know that part on the graph: “Well, survival is a relative term,” where it lays out the percentage of survivors living with severe and life-threatening health problems? Yeah. That.
Austin had an appointment with his kidney doctor yesterday, and, well, it’s not doing so great. I mean, it’s still doing. Doing whatever it needs to do every second of every day, despite being a quarter the size of its average kidney peers. But it has gotten noticeably worse since November.
We’re not in panic-mode or anything. This seems to be part of the process. And that’s not just me being super blase about everything; it’s true. His doctor is hopeful that with extra hydration and a shift in medications, we could see a dramatic turnaround. So Austin now has special permission to have a water bottle at his desk and to bring it along with him anywhere he goes. Of course, the last thing Austin ever wants is special permission to do anything that’s in any way different from what his classmates are doing. But who knows, maybe water bottles will become all the rage for second graders from now on.
Here are the details: His creatinine, that number we watched so carefully throughout the spring and summer of 2010, has shifted upwards in a way that concerns all of us. His estimated GFR (another number we watched so carefully in the spring and summer of 2010) is now 38. When/if it hits 30, he’ll be in Stage 4 kidney failure instead of his current Stage 3. His doctor, who is calm and collected beyond all measure, has assured me that he could hover at any one of these numbers for years on end. So his creatinine might decrease to 35 but then just sit there for three years, before decreasing again to 32. It’s not until it reaches 25 or below that we would start to test potential donors. And not until 20 or even 15 that he would need to start dialysis. So we have time.
She did say that her number one indicator of where someone sits on the continuum of kidney function is how they look, feel and act. And since Austin was doing his usual zoom across the room on her spinning doctor’s chair when she walked in the door, she feels pretty confident that he’s fine. I watch him every day and would whole-heartedly agree.
But as we edge ever closer to the five-years cancer-free mark, we know that we are never truly free of cancer. Its shadow will follow him, and all of us, for the rest of our days.
And now, as I return from a PTA meeting to edit and publish this post, I find myself under yet another dark shadow cast by cancer. The father of one of our past shavees, and a shavee himself last year, died Monday morning from a brain tumor. Unexpectedly. Despite, you know, the brain tumor. He was laughing yesterday morning. Mere minutes before he felt dizzy, laid down, and then was gone. Laughing and talking with the nurses in the extended care facility where he was recuperating from brain surgery before returning home to his wife and three kids. And then he was gone.
And now this woman, who is lovely and upbeat and always willing to help others, is without her partner, forever more. And her children, who were so so lucky to have known him, are without their father. They really thought he might die about three years ago and I believe, from the people who know them better than I do and from the wife’s own writing, that they lived each day to its fullest and never took anything for granted. But still. . . Still.
And still, they move on. Two of this man’s sons would like to shave this Sunday in his honor. I am currently revamping the day’s schedule to fit them and their peers in before the 2pm funeral. And it is my deep honor to do so.
But you know what? Fuck cancer. And all of its shadows.
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:
And here again, on Sunday, watching with glee as her older sister shaves her head in her honor:
She is alive, goddammit, and she deserves to stay that way.
Oh, I haven’t written in ages. Not that I don’t have things to say — I always always do — but the longer I go without blogging, the harder it is to start again. I’ve thought a few times this month about writing, but the days go by and it doesn’t seem to happen. And then, something strikes that simply needs to be addressed.
And this time, it’s Justin.
Justin Miller was one of the five 2012 St Baldrick’s Ambassador Kids, alongside our own Austin, and I felt a bit like I knew him. He’s a few months older than Braedan, could be his classmate if he lived nearby. He was diagnosed young, at age 3, with a neuroblastoma that was bad enough for doctors to give him a 30% chance of surviving five years. He did survive five years, then six and eventually seven. But after relapsing time after time after time, he passed away yesterday at the age of ten.
Of all the Ambassador Kids we’ve watched and followed over the years, Justin is, by far, the one with the biggest personality. He was all boy, obsessed with Legos and being a cancer-fighting ninja. He never backed down from a fight against his arch-enemy cancer, rising up and saying, over and over again, “Let’s do this thing.” He became a bit of a cancer celebrity, especially when he represented St. Baldrick’s at the 2012 Stand Up To Cancer telecast, hobnobbing with the rich and famous.
I have to admit that I was a tiny bit jealous when I saw him there on that stage that night. I was watching the show on TV as they announced the exciting (and necessary) new partnership between Stand Up To Cancer and St Baldrick’s, and out walked Justin with someone famous at his side. They showed his video (here) and I thought, for just the quickest little second, “Why didn’t they choose Austin for that role? He plays with Legos too!” Well, the reasons are many why they didn’t choose Austin: first and foremost, he never ever would have stood on that stage and addressed those thousands of viewers with such poise and humor and confidence. (Can’t you just see little Austi, burying his head into my shoulder and refusing to even glance at the cameras?) But there are other reasons too. Like that Austin & Co. had been the poster children for St. Baldrick’s that year and you gotta spread the attention around. And then there’s the biggest reason: Austin was fine, we were done, and Justin was not. As his mother says in that video, his life depends on every single new advance the scientists make; he relies on the research that will come out tomorrow; he needs every additional dollar of funding to go to pediatric cancer. Needs.
I’ve always felt a bit guilty for that fleeting moment of jealousy, especially when St Baldrick’s shared the news of Justin’s sixth relapse. And then the relapse after that. I knew I would give up any bit of recognition or celebrity or red carpet excitement to have what I have: my child, who will stay after school today to practice his running round-off back handspring combination for next week’s talent show. My child, who will snuggle down in bed next to me tonight to read a story. My child, who is, above all else, present in my life.
I hurt for Justin’s parents today, for his sister, his family and his friends. We “fans” might think we’ve lost something too, but our sadness is nothing, nothing, compared to theirs. We didn’t act fast enough for Justin. The world couldn’t get enough funding into the hands of enough doctors to produce enough new research to give Justin one more fighting chance. So let’s act fast enough for the next kid.
As Justin would say, “Let’s do this thing.”
And so, another Childhood Cancer Awareness Month comes to a close. And I wonder if the general public is really any more aware. Did anyone learn anything new this month, anything that will change their actions or their giving patterns or their voting patterns? Did someone in a position of power see an image or read a story and decide to make a big change? Sometimes you wonder what it’s all for. We “like” some sad photos of sad bald children on Facebook and feel like activists. We share someone’s status update or read a heartbreaking blog written by a heartbroken parent and feel like we’ve made a difference.
We’re not really making a difference. Not enough anyway.
We walked on Saturday in the CureSearch Walk for Childhood Cancer. This was our fourth or fifth time walking and the crowd was smaller than ever. It was a gorgeous day, the route takes you through a gorgeous part of Cleveland (a very short, gorgeous part so that can’t be the excuse). There are free bagels and coffee and even post-walk lunch provided by Chik-Fil-A (trying to earn some brownie points with a non-controversial cause, perhaps?). By no one shows up. Like, really, almost no one. There were maybe 150 people registered. Couldn’t have been more than 200 there. 250 with kids and babies?
It’s weird. And sad. I know everyone has their causes and I certainly don’t go to every walk or race or stair-climb I’m invited to. And I’m not at all guilt-tripping my people for not going, I promise — not one tiny bit. I would have asked harder if I wanted you all there. St. Baldrick’s is our thing and that’s more than enough to satisfy us personally. But in terms of the bigger picture, the big, broad, general public picture and its “awareness” of childhood cancer? Well, it seems pretty non-existent.
And if the public is truly aware — aware of the truth that pediatric cancer kills more children than any other disease (and indeed more than the top five other disease killers combined), that one in every five children diagnosed won’t survive, that of those who do survive, more than 60% will have long-term, life-threatening or life-altering side effects, that less than 4% of national cancer funding goes to pediatric diseases, — if we really know all that and we still don’t show up. Well, . . . like I said, that’s sad.
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.
At the end of last week, I was starting to get worried about our head-shaving event this year, feeling like we didn’t have enough shavees, no one was interested, it was a one-time wonder, yada yada yada. Then I had thirteen new registrations on Friday and Saturday alone. We are now up to 47 children and adults shaving and 3 girls cutting and donating, which is a few more than we had at this point last year. It’s still not too late (I did order a few extra participant t-shirts in an optimistic moment), but it’s almost too late so if you’re still signing up, do it today.
So I’m feeling pretty good about our number of people, but the number of dollars raised leaves a little to be desired. Actually, it leaves about twenty thousand to be desired! Last year, not knowing what to expect, I aimed low, with an initial event goal of $15,000. I quickly upped that to $18K, then $20, eventually $30 and finally settled on $35,000, which we surpassed. This year, I thought I’d save myself the hassle of editing the online goal and started high: $45,000. Well, we are currently at just over $16,000 and Monday I lowered the total to $35,000. Boo.
So, now I’m gonna lay on the pressure. This is serious business. This is the business of saving lives. Every parent of a child with cancer already knows the ugly truth about how other organizations use images and stories of children to do their fund raising, but give pathetically little to childhood cancer research or treatment. The esteemed American Cancer Society gave a mere 3.7% of its nearly 2 BILLION dollar budget to pediatric cancers in 2011. Now, I get that cancer affects a great many more adults than children and I, of course, support well-funded and rigorous research into all adult cancers. But I will refuse to give the ACS a single dollar until they stop prostituting photos of sick children, all in the name of opening donor wallets. That pisses me off. (Can you tell?)
St Baldrick’s is different. All they do, all they fund, is childhood cancer research. That is what they devote every second and every dollar to. And it’s research that is truly making a difference. We have St Baldrick’s fellows right here at Rainbow, making discoveries and treating kids every day. I’ve given you the stats before: how many kids are diagnosed, how many survive, how many don’t. But think about this for a moment: the treatments that kids receive today, Austin included, are developed with adults in mind. They’re intended for use on adult bodies, which are distinct and unique from the rapidly developing bodies of young people. The chemo agents Austin had pumped into his bloodstream for all those months were never meant to be used in a one-year-old. Or a three-year-old. So, by the time they hit age 30 or 40, 73% of the “lucky ones” will have a chronic health problem as a result of their treatment. And Austin will no doubt be one of the 42% of survivors who will be living with a severe or life-threatening condition. In fact, he already is.
The very medicines we give our children to keep them alive will most likely kill them.
That’s not okay. That’s not just an unfortunate consequence, the price we have to pay for keeping our babies alive. It’s unacceptable. And St. Baldrick’s knows it. And they are working tirelessly to change it.
And guess what? You’re not just an idle bystander, listening helplessly to bad news. You can actually do something. You can save a life. And be a hero. And all you have to do is shell out a few bucks. It doesn’t even have to be on the heads of my children; they’ve raised more than $1,600 apiece. You can give to some of the lovely and brave children who’ve raised just $15. Or to the female high school senior who’s shaving her head, and who I’m really hoping will hit the thousand dollar mark. Or to the young mom who’s so terrified that her children may someday have cancer that she figured she better do something about it right now. And so she’s doing something about it, right now.
And you can too.
I never had a chance to post about the CureSearch Walk, as I was busy packing for my fantastic getaway. Thank you to those who joined us or donated on our behalf. We had a nice group of about 25 friends and neighbors who walked alongside us on a beautiful sunny morning. The kids, of course, thought it was all about making baboushkas out of their new bandanas and devouring free bagels. And when they called up those who had lost a loved one for the balloon release, Austin eagerly insisted on going up. “Oh-kaaaaayy,” I hesitated, trying to quickly determine which child we’d release a balloon for. I settled on our beloved Ariana (of course) and Dylan, another young friend whose story is too pathetically heartbreaking to relate on this dreary gray Wednesday.
The overall event was nice, raising more than $60,000 for research. My one friend who attended for the first time was amazed at how small it was, compared to the breast cancer events she’s used to. Which brings me to my own little pity fest, egged on by the ever-increasing pink in our world. I don’t mean to begrudge the breast cancer movement its marketing success. I am indeed amazed and impressed by the truly remarkable feat it has achieved in in just three decades, making this once-silent disease the darling of corporations and advertising campaigns. And of course I believe we need to fund breast cancer research and of course I believe that awareness raising is a part of that. And I hate to act like my disease is the only one that matters, because if we all thought that, we’d never make any progress.
But the fact that Childhood Cancer Awareness Month falls right before Breast Cancer Awareness Month does make for a stark comparison, as that wave of pink inevitably bleeds over the calendar’s edges. I remember last fall, over Labor Day weekend, a local design shop began setting up its two-story pink ribbon display facing a busy intersection. Now, I am perfectly fine with them supporting breast cancer awareness and research, but does anyone even know the ribbon color for childhood cancer? It was Labor Day, all of three days into September. Keep your pink confined to those 31 days, dammit!
Okay, that was harsh and selfish, and probably isn’t the answer at all. Maybe we don’t need to designate any set period of days or weeks to one disease versus another, just like we don’t need to confine black history to the month of February. Maybe we simply need to look at numbers and impact and fairly and appropriately fund research across the board. Easier said than done, I know. And it’s no doubt true that more adults get and die from cancer than young people do. But it’s frustrating to know that pediatric cancer kills more children each year than AIDS, diabetes, cystic fibrosis, congenital heart defects, asthma and muscular dystrophy combined. But receives 4% of all national funding for cancer research and treatment. That alone should shock us into action. Not to mention the fact that of those children who do survive, one quarter suffer from life-threatening or life-altering complications from their treatment. And a major study out of Britain recently concluded that for survivors of childhood cancers “their risk of dying earlier than their peers who had never had cancer remained significantly elevated even after 45 years.”
So, I’m certainly not proposing that we stop or slow the progress made by movements like breast cancer awareness (although some people do raise very interesting questions about the tactics and especially about the promotion of products with pink ribbons that likely contain carcinogens, see here and here). But I am proposing that we focus on what’s actually important — in the case of breast cancer, what’s actually important is not saving the ta-tas but saving lives. And the same goes for our nation’s children. We must save them, every one.
There are too many balloons in this scene:
Childhood Cancer Awareness Month is quickly coming to a close and I feel as though I haven’t done my awareness-raising duties. So, here’s my please-come-walk-with-us-this-Saturday push, as published in The Heights Observer:
Krissy and Mark Gallagher, also of Cleveland Heights, are participating in the Walk for their five-year-old son Austin, a two-time survivor of kidney cancer. “Austin has lost his entire right kidney and half of his left to cancer,” explained Krissy. “He’s had 10 surgeries, 13 months of chemotherapy, 12 rounds of radiation, and has spent hundreds of nights in the hospital. Despite all that, he’s one of the lucky ones. Because he’s alive. Until we can say that for all children diagnosed with cancer, our work is not done.”
And that’s just it: Our work is not done.
Childhood cancer remains pitifully underfunded, with only 4% of dollars raised by the American Cancer Society going to research for pediatric and young adult cancers. That’s why our work isn’t done.
No new chemotherapy drugs have been developed specifically for childhood cancers in more than twenty years. That’s why our work isn’t done.
Austin’s cancer story, featured here in the first newsletter for the parent support group In It Together, is sadly not unique. But instead starts anew for nearly 40 families every single day. That’s why our work isn’t done.
Earlier in the month, following the fabulous Stand Up To Cancer telethon, there were many Facebook statuses that read, “I stand up for. . .” I commented on one, listing the names of eight children: Austin, Ariana, Ashley, Dylan, Olivia, Abby, Seamus and Emily. Afterwards, I sat back and read over my list and realized that only two of them, including my own Austin, were still alive. Two out of eight. That’s why our work isn’t done.
Please join us for the CureSearch Walk on Saturday, if you can. Stand with us. Walk with us. Because our work isn’t done.
We were doing some repairs to the ceiling in Austin’s closet last week and so removed all of its contents to his bedroom floor (boy, that was scary). Along with a silly array of clothes, shoes, blankets, puzzles and too small snowpants came his bag of wishing stars. It had been tucked away on the back of a shelf since his last overnight stay at the hospital, more than a year and a half ago.
I always brought it along with us, even if we were scheduled for just a single night. I usually only put a few of our favorite stars up, just enough to decorate the room a bit and give me that necessary feeling of security, as if those stars were watching over my little one as he lay in that bed. The longer we stayed or the more major a procedure he was getting, the more stars went up. In those dreadful days and weeks leading up to Christmas 2009, his room looked like this:
But we got lazier as our visits went on and on (and on), and I would try to get by with hanging only ten stars at a time. Austin was no fan of this and once scolded me, “This room looks ugly! We need more stars!” He certainly made sure we never left the house for a hospital visit without that overflowing paper bag full of wishes.
I’ve thought on and off about what I should do with them now to ensure that they last. The stars from his first round of cancer were long ago inserted into a photo album for posterity. But those were all made by me, transcribing the wishes of others, so they were much flatter and simpler than the spectacular, glittery, bedazzled stars made by all of you.
I suppose I should at least photograph each individual star before they get too wrinkled and crumpled in that bag.
But anyway, that bag. The kids must have gone through at least a few of them because there were some on top that were not part of our regular rotation, some I haven’t seen in a good long while. Including one from my father that said, “I wish that Austin and I will go skiing together next winter.” I remember at the time thinking, “Oh that’s sweet … but not gonna happen.” Not the very next winter at least.
But it did happen. My dad wrote that wish in December 2009 and by the following winter, March 2011, just fifteen months later, they went skiing together down the mountains of Park City, Utah. (It wasn’t a very successful skiing adventure, that day, but that’s a story for another time.) But the remarkable fact is that they did it. They skied. Together. The very next winter.
The wish came true.
And I started wondering: How many more of those wishes have already come true? How many of us — friends and family and strangers — wished for my little boy and how many of those wishes have actually happened?
And the answer is a lot of them. All the simple little ones like laughter and giggles, cartwheels and playdates, going to school and making friends and riding a bike. He’s done all those things. He does them every day. He’s had that sleepover in the tent (well, he didn’t last the whole night, but still …), he’s gone sledding down Coventry Hill and boating on Lake Chautauqua. He’s met his little cousins and visited with friends far and near. And the biggest wishes have come true too. He is here, after all. He is with us, and so is his kidney, chugging along.
He’s checking’em off, one by one. His own joy-filled bucket list. That he has many many years to complete.
I was awakened Friday morning at 6:23 by the robocall from our school district announcing the fifth of our five allowed Calamity Days, for another seemingly-out-of-the-blue overnight snowstorm. When I logged on to Facebook to publicly announce my distress at yet another day cooped up with the kids when I thought I might actually get something done (because that’s what we do with our distress these days), I discovered that my “calamity” paled in comparison to what was happening in the rest of the world.
After watching the computer and TV spew forth new images of death and destruction all day, I was struck my how small we all are in the face of, well, in the face of death and destruction. And yet, how strong and powerful we can be at the very same time. That night, Mark and I rented 127 Hours, the positively stunning true story of hiker Aron Ralston. The next night, we watched Charlotte’s Web with the boys. I know it seems strange to lump these disparate subjects into one narrative, but they seemed to come together in a jumbled and sad and beautiful way. A way that reminds us to appreciate all that we have. To notice how much each small thing matters. The tiny miracle that is the spider spinning its web. The child who believes she can make a difference by fighting for what is just. The strength found deep deep within, when no other strength is left, to cut off one’s own arm. Out of a simple and sheer and unstoppable desire to live.
Having seen and experienced suffering in the up close and personal way that we have over the past three years gives me an unshakable and indescribable affinity with the suffering of others. I’m not saying I’ve been there, because our suffering is minor compared to that of many, but I do feel like I can recognize it, like I get it.
Of all the images coming out of Japan right now, the ones that show piles of cars and trains and airplanes, or crushed houses, or huge roiling waves of debris, are all breathtaking. And yet, none of them are quite so moving as those of the toddler standing alone crying for its mother, or the four-year-old stoically being tested for radiation by a masked man, or loved ones desperately searching the lists of names taped to the walls.
The moments big and small, personal and national in scale all converge together in one great picture of humanity. The suffering one small boy in a hospital bed, the suffering one young man trapped by a boulder. The suffering of a neighborhood, a state, a nation, a world. And the beauty and strength and grace of all those fighting to move beyond it. To survive one more day.
There is no brilliant new wisdom for me to impart except this: Calamity days or not, we hold ours tight. Hold yours tight too.