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Flare Sites

Further review by several radiologists of the cranial MRI from last Thursday has identified multiple flare sites throughout Rebecca’s brain.  These are areas of irritation that indicate emerging tumors.

So we won’t be going to Philadelphia for surgery.  The recovery time afterward, and the possibility of brain damage from the resection, mean that removing the large tumor might actually reduce the amount of quality life ahead of her.  The odds are overwhelming that there will be no surgery at all.

We are meeting with the Cleveland Clinic team on Monday morning to work on finding a clinical trial that is open and would be appropriate for her medical condition.  There are other, more experimental treatment ideas we will investigate, again as appropriate for the situation.  But the sad truth is that she may not live long enough to get into a trial or attempt a new treatment.  The fact that there are tumors emerging in multiple places means she never really had a chance to be cancer-free.

All we can hope to do now is delay the progression of the cancer as much as possible, without unduly sacrificing her quality of life.  It’s theoretically possible that the right treatment, whatever that might be, can bring the tumors to a near-halt, but that would be a miracle in itself.  To see a regression would be a miracle beyond miracles.  The cancer is just too aggressive and too pervasive.

The doctors tell us she’ll be completely fine right up to the point where she suddenly isn’t, and then it will most likely be over within a few days.  Much like last August.  That will almost certainly be within weeks, or maybe a few months from now.  Or it could be today.  They can’t say, and even if they could, I don’t know that we’d ask.  It really is better not to know what day your child will start to die.

I just wish they could tell us how the process will unfold, so we could prepare for it and make it as comfortable and free of fear as possible for her.

It is still possible that treatments will push that day off, maybe far enough for Rebecca to turn six and go to Cedar Point as soon as it opens this summer.  That was her top wish when Make-A-Wish came, to go to Cedar Point and win all the boardwalk games.  Being Cinderella at Disney was her runner-up wish.  We hope that we have enough time to make at least that wish come true.

We told Carolyn and Rebecca this morning.  They took it very well, because they still trust and believe in us and our ability to fix this, and we can’t bring ourselves to take that away from them.  Better to let them hold on to that sense of safety, even if just for a little while longer.

White Blotches

Yesterday, the news came that Fred Phelps had died.  A lot of things have been said about him, some reflective, many unkind.  I always thought that whether or not he actually believed it, he promulgated a particularly consistent (and therefore, it might be argued, honest) strain of theology.

Because if you truly believe that everything is in God’s hands, that everything happens due to God’s will, and that God should be praised for His works, then yes, if you thank God for good fortune and miraculous happenings, then you should also thank God for MH370, for 9/11, for dead soldiers, for abortions, for tragedies, for anything and everything that happens.

You should thank Him for the tumors in a little girl’s brain.


Yesterday, we got the news that a new tumor has emerged, far from the site of the first tumor, outside the proton radiation zone.  It’s growing incredibly fast.  The MRI eight weeks ago showed nothing unusual there, and now there’s a white blotch almost the size of her left eyeball.

From what we can see on the MRI, this tumor is intermingled with brain tissue.  To remove it is to cut out a piece of her brain.

It may still be removable, despite the damage that will inflict.  We are waiting to hear from CHOP whether they feel surgery is an option.  If so, then we will go back to Philadelphia, whenever they tell us to be there.  This time, the whole family will go together.  After the surgery, if it happens, there will probably be another two months of radiation and chemotherapy.

If surgery is not an option, then Rebecca most likely has no more than a few weeks to live.  The tumor is growing too fast to expect anything else.  She will never be six, or graduate kindergarten.


I want to tell you that I have hope and confidence in a good outcome, but I can’t.  Because, for the first time, I don’t.  I expect that the pain and grief I feel now will soon seem like the smallest of aches.

We haven’t given up on her or her treatment.  We will still do everything we can for her.  Including, when the time comes, making the best decisions we can about the length and quality of her life, when one must be sacrificed for the other.  Those choices will be in our hands, and I hope we’ll have the strength to choose wisely.

No matter what, we’ll be there for Rebecca, all of us.  Kat and me, Carolyn and Joshua, our family and friends.  For her, and for each other.

The Web At 25

The Web is celebrating its 25th anniversary today, taking as its starting point the March 1989 publication of “Information Management: A Proposal”.  I was honored to contribute a small greeting to the Greetings page over at The Web At 25.  Following on that, I wanted to add a few more words here, mostly about my own Web history, because the Web is nothing if not a vast collection of all of us sharing ourselves.

I was first exposed to the Web in mid- to late 1993 by my friend and (then) co-worker, Jim Nauer, and it instantly caught my imagination.  I’d worked on some hypertext systems before, including a summer spent on a DOS-based hypertext system whose name now escapes me that was used to mark up the Ohio Legal Code on CD-ROM for a publisher named Banks-Baldwin, now a division of Thomson Reuters.  This Web thing, though, this was something altogether different and more powerful.  By late fall I’d gotten my hands on a paper copy of the HTML 2.0 specification and on December 3th, 1993, I finished marking up my first document: the Incomplete Mystery Science Theater 3000 Episode Guide.

At the time, I was a hardware jockey for the Library Information Technologies department at Case Western Reserve University, swapping out bad SIMM chips in online catalog terminals and maintaining a database of equipment serial numbers.  So in my downtime between service calls and database updates, I had the freedom to install Mosaic betas and start surfing around to see what there was to be seen.  My increasing obsession with the Web eventually led me to become Webmaster of CWRU’s first “pure” Web site.  (Before that, there was an HTTP interface to our Gopher server, which was the first www.cwru.edu.)  And as part of that, I published tutorials and compatibility charts and spent a lot of time on Usenet and mailing lists dedicated to this new Web thing.

I do remember the moment that the Web blew me away a second time, and it’s a moment of total coincidence, which is of course why I remember it.  On April 3rd, 1996, I discovered (I forget exactly how) that CNN had a Web site, and I was astonished—a news network taking the Web seriously?  Really?  So I loaded it up, and the top headline was “RON BROWN KILLED IN PLANE CRASH” or words to that effect.  We turned on a radio, and there was nothing about the crash for at least an hour, maybe more, and of course newspapers wouldn’t have anything to say until morning, and I remember thinking: What is wrong with these other channels, that they’re so slow and unresponsive?  That was my first direct glimpse of the future of information velocity, something that permanently altered my instincts.

Over the years, the Web has obviously been good to me, and I’ve tried to be good to it in return.  The original Internet aesthetic of sharing what you know and making use of what others share, one that carried onto the early Web, has always resonated with me, as did the obvious simplicity (and thus robustness) of the Web itself.  As simple as possible, and no simpler; small pieces loosely joined; openness to all—these are principles I held dear and which the Web has always embodied.  Which means that the Web helped me maintain those principles, over these past two decades, by showing that they can and do work.

As I said in my greeting for The Web at 25:

The web is the most human information system we have ever seen and that may ever be, open to anyone with the interest to build something, gargantuan and riotous and everything we are and hope to be. It’s been a privilege just to witness its emergence, let alone play a part in it.

I suppose I could have just posted that here, and skipped the lengthy reminiscing, but what fun would that be?

What Cancer Can Kill

Cancer is insidious, of course, but its tendrils spread in more ways than you might think.

(This is all true for pretty much any cancer, even the ones that aren’t aggressive and aren’t pediatric, but I’m the parent of a child with aggressive pediatric cancer, so that’s what I’m going to talk about.)

The most obvious insidiousness is the way that many cancers send out thin fibers, interpenetrating healthy tissue, hiding literally microscopic reservoirs in places it can’t be seen.  That’s bad enough, of course.  It’s what the surgeries and radiation and chemotherapy are meant to combat, and if they’re successful then we’ll have saved her life.

What’s almost as bad, from a long-term perspective, is how, for us as her parents and therefore for her, cancer shades everything that happens in our daughter’s life.  Kids are supposed to play and run and fall down and get scrapes and bumps and then get back up again to get on with life.  They’re supposed to push themselves too hard, get exhausted, catch colds, run fevers, build up their immune systems and their experiences.

But then here comes cancer, and we second-guess every part of that.  If she falls and gets a bruise, we have to watch it carefully to make sure it doesn’t blossom into a hematoma or worse, a side effect of the chemotherapy.  If she runs a fever, we have to keep an incredibly close eye on how high it rises, because fever could be the onset of neutropenia.  If she complains of a headache, we immediately wonder if we need to get her to an MRI to make sure the tumor hasn’t come back.

Or, you know, she might just have a headache, or a viral fever, or a scrape that will quietly heal up.

Even if a child is lucky enough to survive cancer, there is the very real danger that it could effectively steal their childhood.  We can’t just let Rebecca be a kid, however much we might want to do so.  And we do.  Oh, we do.  We always wanted our kids to have the chance and the time and the space to be kids.  To make mud pies, nail together scrap wood to make a fort in the backyard, wreck the kitchen trying to make a chocolate cake, properly learn to chop vegetables, climb trees and take gym class and wrestle with siblings and just be a kid.

And it’s hard.  It is so hard, because some of those things we have to just flat-out forbid her to do because of the risks, and other things we have to treat as way more serious than we ever would have.

There are no more mud pies, because tetanus is in all the soil everywhere.  Gym class is out, because of the risk of internal bleeding as the result of a normal fall.  We can’t just tell her to “walk it off”; now there’s three rounds of washing and antibiotic cream and two crossed bandages over the smallest of scrapes, which risks making all the kids germ-phobic and hypochondriac by example.

There’s no more “too bad about the cold, but at least it will strengthen her immune system”, no more shrugging off a low-grade fever with Tylenol, chicken soup, and a day in bed.  Now we own a hospital-grade oral/axillary thermometer, disposable probe sleeves and all, because if Rebecca’s temperature ever rises above a very precisely defined threshold, we take her straight to the hospital.  Not because we want to, but because the doctors have made it very clear that an elevated temperature might be nothing, or it might be the beginning of a week or more in the hospital as she fights to survive what would merely inconvenience (almost) any other child.  We can’t even give her Tylenol, because its magic fever-lowering properties could mask a much deeper problem.

For that matter, we’ve always had a relatively lax attitude toward germs and allergens.  We didn’t let the house become a pigsty by any stretch, it’s not like we were smearing them in filth; but now we have hand sanitizer bottles mounted on walls all over the house and two high-grade high-capacity dedicated HEPA filtration units.  Not because we want them, but because our daughter might one day need them.

Helicopter parenting?  Please.  Try NSA parenting.  What’s more, try it even while you hate every inch of it, because it’s forcing you to be the kind of parent you swore you’d never be.

We want our kids to learn that cuts and bumps and bruises are part of life and something you shake off and move on from.  Instead, we risk teaching them that cuts and bumps and bruises are sources of deadly danger, something to worry about and obsess over, something to avoid at all costs.

Sure, we can talk about everything with them, and we do, but children pay more attention to what you do than what you say.  We try to balance things out, find ways to show that life is more than dealing with cancer, and fervently hope that they learn the lessons we want them to learn instead of what we’re afraid they’re absorbing.

I know it’s possible to do right, I do.  I’ve seen it done before, and lived the results.  I know that we’ll do our utmost to make it happen.  It’s just so very, very hard not to constantly worry that even if we do save her, it will be at the cost of her childhood, and the childhoods of her siblings as well.

A St. Baldrick’s Appeal From Carolyn

I’m turning this post over to my eldest daughter, Carolyn, who has a favor to ask of you.

My name is Carolyn Maxwell Meyer and I would like to tell you about something going on in my life, and about my sister, Rebecca.  My sister Rebecca is 5 years old and loves to play with our little brother Joshua who is 3 years old.  We all like to sing, dance, and play with friends, but we do not live a normal life, because Rebecca is undergoing treatment for a rare brain cancer called anaplastic astrocytoma.

To help Rebecca and all the other children with cancer, I’m raising money for childhood cancer research during the St. Baldrick’s Shave-A-Thon.  I’m captaining my Elementary School team, Roxboro Cares, and shaving all my hair off my head to raise money for childhood cancer research.

Did you know that kids’ cancers are very different from adult cancers?  And childhood cancer research is extremely underfunded?  So I decided to do something about it by participation in the St. Baldricks Shave-A-Thon.

Now I need your help.  Will you please make a donation?  Every dollar makes a difference for thousands and thousands of children, including my sister.  All infants, toddlers, school aged, teens, and young adults fighting childhood cancers need your help.

Having a sister with cancer sometimes makes me feel like I’m alone in a dark room and no one will come and get me out.  Please donate to help raise money so other sisters never have to feel this way.

If you can help support Carolyn’s efforts, either by donating to her directly or to the Roxboro Cares team, we would all be most grateful—almost as proud as we are of Carolyn.

Bill Killed

Despite today being a U.S. holiday (so no mail delivery today, folks!), both my insurer’s customer care department and the hospital’s billing department were open, and I was able to confirm that:

  1. There should be no patient responsibility for the bill in question, and;
  2. The hospital sent the bill in error, and it should be disregarded.

My guess, which I couldn’t get officially confirmed, is that because the bill was for a claim that had been under review for a couple of months, some bit got inadvertently flipped during the review process, making the system think that we were responsible for the bills instead of our insurer.  I’ve worked with computers and people long enough to have that feel like a plausible scenario.

So that’s that, it would seem.  Of course, if I get another such bill, I need to call the hospital back and ask them what’s up, but at least now I have confirmation that my plan prohibits “balance billing”, as it’s called.  (And thanks to commenter dj for that information!)  So if I get a similar bill in the future—that is, one that says I’m responsible for charges beyond co-pays and the like—I can bypass the insurer and just call the hospital.  Not that I have a burning need to bypass them; I actually really like my insurer.  Their customer service people are knowledgeable and friendly, and their headquarters is right downtown so I could drop by in person, if I ever felt the need.

I’m lucky, because I can afford to have health insurance, and far more lucky that I have access to a group plan through COSE that takes care of so much of the cost of preserving Rebecca’s health.  (I’ve worked hard, yes, but I’ve also been incredibly lucky.  The two are not mutually exclusive.)  If the biggest cost I have to pay is the time it takes to sort out the occasional billing snafu, it will be one of the first things I list at the Thanksgiving table this November, and every November to come.

Kill Bill

Sometimes, it feels like the whole system is stacked against you and your peace of mind.  (Some would say that’s because it is.)

For example, this evening after dinner I opened up the mail.  One of the envelopes was clearly a hospital bill.  That’s not unusual, despite our having very good insurance, because there are co-pays and so forth.  Even if you regularly go see a specialist who is managing your radiation therapy, say, that’s an office visit.  Co-pay.  So we’re used to getting bills for $30 or $75 or whatever.

Anyway, I opened this one up and it took me a few seconds to find the amount due, because I thought it was yet another opaque identification number and my eyes kept skipping over it.  Once I finally managed to focus on the right spot, using the text labels as a guide, I confirmed that it said we owed the hospital $122,519.95.

Yeah.

Before anyone rushes off to set up a fundraising campaign, let me explain that I believe this is a billing error, and we won’t actually have to pay it.  You see, I was able to track down two entries on my most recent benefits statement from our insurance company that directly relate to this bill.  For a collection of procedures and treatments, the hospital had billed the insurance company a total of $350,057.01.  (Which is a little more than a fifth of the total ‘retail’ cost of treatment to date, as it happens.)  The insurance company indicated that the provider had accepted $227,537.06 as payment in full, and that we were responsible for $0.00.  The difference between the billed (retail) cost and the accepted cost is, surprise surprise, $122,519.95.

So this is most likely some sort of coding error at the hospital’s billing department, and once I talk to them, it’ll be cancelled.  I HOPE.  Because I really would dislike being erroneously sent to collections for a six-figure sum, and my credit rating would probably hate it too.

This has of course added to my stress, because even the faint prospect of having to cough up $122,519.95 is worrisome, and the possibility of being sent to collections due to someone’s screw-up is even more worrisome.  And I can’t even get started on dealing with it until Tuesday morning, because the billing department has very white-collar hours and Monday is President’s Day.  It’s not going to drive me bat-guano crazy, but it is going to annoy me, having that very large figure sit there, unaddressed, for three days.  Three days out of nine, by the way: the due date on the bill is February 23rd.

Oh, but—and this is actually the part where my mouth twisted into an ugly line—if the bill is paid within 30 days of receipt, it qualifies for a 20% “prompt pay” discount.  Because hey, we say it’s due by such-and-so date, but if you pay by a date later than that but still soon, we’ll only make you pay $98,015.96!  Such a bargain!  Act now, before this amazing deal is history!  Because if we can entice you into quickly paying us money that’s not actually owed, we can take our sweet, sweet time giving it back to you when it turns out the bill was wrong.

Assuming it’s wrong, that is.

So come Tuesday morning, I have to call the hospital’s billing department to see if they agree with my assessment and can clear everything up, and if they don’t then I call the advocate at my insurer to see if they can help me out, and probably have to fax document to one or both places, and generally burn time I don’t have to deal with stress I don’t need.  Because why not add more stress to the situation?  It’s not like dealing with potentially life-threatening pediatric cancer wasn’t stressful enough, heavens no.  Why not add the specter of credit ruination and/or bankruptcy to the proceedings?  You know, for the lulz.

Yes, if it turns out that I actually do have to pay this bill, I will indeed set up a fundraising page.  I know there are people ready and willing to help us, and that makes all this a lot easier to cope with.  You can’t even imagine how much that helps mitigate the stress.  But I keep thinking about all the people in similar situations who don’t have that kind of posse at their back, and who can’t afford good (or any) insurance.  What do they do when a bill for $350,057.01 arrives, and they know that it’s all theirs?

AEA Orlando: Special Edition

Yesterday, the team at An Event Apart unveiled a special addition to our schedule: a Special Edition event, to be held at The Contemporary Resort at Walt Disney World this coming October 27-29, 2014.  That’s right: we’ll be there during both the EPCOT International Food & Wine Festival and Mickey’s Not-So-Scary Halloween Party at the Magic Kingdom.  If you’ve never been to the Halloween Party, you should make it a point to go.  It’s really great.  The Imagineers go all-out to add fun Halloween touches all over the park, perfectly pitched to be spooky while still being, well, not so scary.  And as for the Food & Wine Festival, yum!  It’s actually where I discovered the one form of alcohol I can stand, and there are some great food stalls scattered all around the World Showcase.

But of course, you’ll really want to be there for An Event Apart!  We’re adding a lot of new and interesting enhancements to this show.  In addition to the brand-new Gold Pass, which includes (among other things) a backstage tour of Walt Disney World, AEA Orlando: Special Edition will feature three full days of talks, eighteen speakers in all.  I’m incredibly pleased and excited to say that I’ll be among them, delivering a talk on design.  Yes.

As regular readers know, I’ve had to withdraw from almost all travel and speaking this year, including for An Event Apart, and it’s been tough to be away.  I love what Jeffrey and I have created.  I love being there to hang out with other members of the tribe.  I love being able to learn from the best and share a piece of what I know.  It was absolutely the right decision to stay home with my family in this time, but still.  I miss being there, and I can’t wait to return.

And when I do, I’ll be presenting not about CSS, but about design and how to do it better.  Specifically, the talk is called “Designing for Crisis”, which draws on my experiences of the past seven months to illustrate how design can let people down when they most need its help, show examples of design that does help people in crisis, and explore ways to approach design in order to not let those people down.  Because if you’re helping people in crisis, you’ll be helping those who aren’t in crisis as well.

It’s a big departure for me.  For many a year now, I’ve been the guy who geeks out onstage over trippy selectors and obscure browser bugs.  You know, a CSS nerd.  But as I considered whether I had anything to say in Orlando (and at Rustbelt Refresh, which invited me to speak around the same time), I slowly realized that this talk was in my head and that I was incredibly passionate about getting it out.  I could see the narrative, the lessons I could underscore with it, and the advice I would give to designers.  I haven’t been this consumed by a talk in quite a while.

I hope you’ll be there to see and hear it, but even if that doesn’t sound entirely like your cup of tea, there are seventeen other amazing speakers filling up all three days—Karen McGrane, Mike Monteiro, Jenn Lukas, Luke Wroblewski, Jaimee Newberry, Scott Berkun, and so many more.  We have the complete schedule up now, so go, bathe in the awesome and make your plans to join us!

(P.S.  If it will take you a while to get approval, better start the ball rolling now.  We’ve already had a number of registrations in the 30 hours since we made the surprise announcement, and this event being as new and different as it is, we honestly don’t know long tickets will last.)

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