Posts from March 2014

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.

• Flare Sites was published on Saturday, March 29th, 2014.
• It was assigned to the Cancer and Rebecca categories.
• There have been forty-two replies.

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.

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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.

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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.

• White Blotches was published on Friday, March 21st, 2014.
• It was assigned to the Cancer and Rebecca categories.
• There have been ninety-three replies.

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?

• The Web At 25 was published on Wednesday, March 12th, 2014.
• It was assigned to the History and Web categories.
• There have been five replies.

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.

• What Cancer Can Kill was published on Monday, March 10th, 2014.
• It was assigned to the Cancer and Parenting categories.
• There have been eight replies.