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Archive: 2013

Holding Pattern

A lot of people have asked how they can help us, and the truth is that right now, I really don’t know.  Even more importantly, I don’t need to know.  Throwing me a thousand things to think about is not going to help.  We love and cherish and appreciate all the expressions of support and caring more than most of you can imagine.  We are helped by knowing that you want to help.  If we knew of a specific way you could help, I’d say so, and will.  We’re just dealing with a lot right now.

We have a meeting today with a hospital social worker who will give us information on things like the Ronald McDonald House and other nearby short-term housing solutions, and whatever other things they know we need to think about that haven’t occurred to us yet.  We’ll deal with those things as they come.  We have to deal with everything as it comes.

Some people have asked if there’s a way they can donate money.  Please, not yet.  I literally do not know how much all this will cost, not even within a rough order of magnitude.  Maybe it will be a few tens of thousands of dollars that we can easily pay on a plan—hospitals are quite used to that sort of thing.  Maybe it will be hundreds of thousands of dollars, or well over a million.  I have not the first idea, and as of this moment I really don’t care.  Believe me when I say that if we need financial assistance, I will ask for it.

I realize that I’m effectively asking everyone to stay in a holding pattern, and that’s kind of sucky when the instinct is to jump into the breach and help, but that’s what we need at this moment in time.  Be ready and willing to help when help is needed, and hold us in your thoughts.

The Diagnosis

Rebecca has grade 3 (anaplastic) astrocytoma.  With six weeks of proton radiation bombardment of her brain and a year of mild chemotherapy, she still has a 50% chance of dying at some point in the next five years.  Because if, after all that treatment, another tumor emerges, there are no more treatments that will help.  We will only be able to watch her die.

On the other hand, if she survives those five years, her chances of growing to adulthood are excellent.  In the meantime, her quality of life will not be terrible, however long it lasts.

There are very few proton treatment facilities in this country (or any other), but one of them is the Children’s Hospital of Philadelphia.  We have already decided that is where she will receive her treatment, which will begin after two weeks of intensive planning.  I don’t yet know where in Philadelphia we will live for the next two months; not in the hospital, as the radiation therapy is outpatient, and we will be discharged once she regains her physical strength.  I know we will find a place, one way or the other.  For now, she is still in the hospital, and we are trying to face each day as it comes.

Kat and I are still deep in shock.  Carolyn is struggling mightily to cope with everything that’s happening to her sister, her family, and her life.  Rebecca is still physically extremely weak and doesn’t want to know what the doctors said.

Me either.

I don’t have much else to say right now.

77 Hours

The days leading up to the discovery of Rebecca’s tumor were, in a lot of ways, just as filled with uncertainty as the days after.

On the day before we left for vacation, Rebecca had her hair tightly braided by a professional.  We went with tight braids because we were headed to the beach, and we wanted a hairstyle that offered some hope of washing some of the sand off her head.  That evening, she complained that she had a headache, so we gave her some ibuprofen and sent her to bed.

Was the tumor already making itself felt, or was it just that her braids hurt her scalp?

The next day, we drove through the Appalachian Mountains on our way to the southern tip of New Jersey.  Halfway through the mountains, Rebecca complained that her back hurt, and shortly thereafter threw up pretty thoroughly.  We pulled over, washed her and her things down as much as possible, told her to watch out the window for a while, and continued on.  After that, she seemed fine, eating normally and fighting with her sister over who got the top bunk in our vacation rental’s second bedroom.

Was the tumor already making itself known, or did she just get car sick?

That night and the next morning, she played on the beach, jumping waves and making sand castles.  After lunch, she lay down for a beach nap, and it went much longer than usual—more than three hours.  We braced ourselves for a rough bedtime, but instead she threw up a couple of times that evening and complained of a headache and sore throat.  Kat took her to an urgent care center, where a rapid test for strep throat came up positive.

Was the tumor already affecting her, or did she just have strep throat?

Given her symptoms and the test result, the urgent care staff prescribed antibiotics and sent her on.  Rebecca came back to the apartment and fell asleep almost immediately.  The next morning, she still felt sick, so she lay in bed and ran to the bathroom a few times to throw up, usually just after she took her antibiotics.  By that evening, she was sufficiently dehydrated that Kat took her to the emergency room to be evaluated and rehydrated.  So Rebecca was evaluated and rehydrated, given some anti-nausea medication, and sent home.

Was the tumor already sickening her, or was she just having a reaction to the antibiotic and/or the anti-nausea medication?

The next day Rebecca was increasingly lethargic and continuing to throw up.  We were feeding her 5mL of Pedialyte by dropper every five minutes in an attempt to keep her hydrated and nourished until she got over whatever was sickening her—we’d started to wonder if she’d caught a virus to go along with her strep throat, as there are several with those symptoms making the rounds—and could start eating food again.  This continued through the day and all through the night.  Every few hours, just as we started thinking that she’d turned a corner, she’d throw up whatever we’d gotten into her.  Past midnight, she started complaining of a headache just before throwing up.  I asked her about common migraine symptoms, none of which she had.  Occasionally, as she lay limp in my lap, her limbs would twitch once, the way they sometimes do when you’re falling asleep.

Was the tumor already disrupting her brain, or was she just exhausted from the vomiting and lack of consistent sleep?

By morning, we decided to switch her to a different antibiotic.  We were guessing, grasping at straws, feeling more uneasily concerned, but not knowing what else made sense to try.  I went to pick the new prescription up from the pharmacy.  While I was gone Rebecca threw up more than her stomach should have contained, and did so repeatedly.  Before each bout of vomiting, she would grab her head and writhe on the floor in pain.  Before I had returned, Kat knew that Rebecca had to go back to the emergency room.

So we went, and Rebecca sat listlessly in a chair with a bucket in her lap.  Eventually we were taken back, and Rebecca was hooked up to intravenous saline and anti-nausea medication.  It seemed to help, but she wasn’t getting any more energetic.  We sat there with her all afternoon, getting sympathetic looks from other patients and their families.  “Such a little angel, it’s a shame to see her here.  I hope she’ll feel better soon,” one said.  Around 5:20pm, I left to reclaim our other children from the day sitter we’d hired.

Just before 6:00pm, Rebecca had a seizure.  She came out of it and was rushed to the CT scanner.  After her scan, I talked to her on the phone, and she sounded really good.  Like her old self, perky and mischievous, better than she had in days.  We said “love you” to each other and hung up.

Five minutes after that, Rebecca went into another, more severe seizure, and didn’t stop.  The ER staff broke into the crash cart, administered paralytic drugs, and intubated her to keep her alive.  I found out as it happened when I took a call from Kat and the first thing I heard was her sobbing voice calling out, “I love you, baby, Mommy loves you…”

I might have died in that moment from the freezing terror that spiked through my chest.

The CT scan showed a mass.  The regional medical center requested a life flight to The Children’s Hospital of Philadelphia.

The total elapsed time from the beginning of that long beach nap to her first seizure was 77 hours.

How little we know, even when we think we know.  Rebecca had a sore scalp from her braiding.  Rebecca was car sick.  Rebecca had strep throat.  Rebecca wasn’t tolerating the medication.  Rebecca had a virus in addition to strep throat.  Every one of these hypotheses fit the available data.  Every one of them was reasonable and backed by the assessments of medical professionals, one of whom was her mother.

Yet somewhere in that progression, what we were really seeing was the emerging effects of a brain tumor, the last thing we would ever have suspected.  Where was that line crossed?  Which of the complaints were what they appeared to be, and which were the zebra-striped thestral of a tumor disguised as an ordinary pony?

We’ll never know, any more than we really knew what we were seeing as it happened.  I have my suspicion, as the title of this post suggests, but I’m going on instinct and hindsight-double-guessing.  I could be wrong.  Maybe it was when she complained about her braids.  Maybe it was months ago, when her usual fiery stubbornness intensified, something we put down to developmental appropriateness.  Maybe it was halfway through the vomiting period, with that effort spiking her intracranial pressure in a such a way that it shifted the tumor into a blocking position, causing the pressure to continue to build and build until she started seizing.

We don’t know.  We never know.

Three Steps Forward, Two Steps Back

As we were warned by many and are beginning to learn the very hard way, this is a journey of many setbacks.

The tumor that had grown in Rebecca’s head, forcing itself between all the most critical areas of the brain, was entirely or almost entirely removed.  It’s mostly likely the latter, since entirely removing the tumor would have meant cutting into brain matter that simply cannot be sacrificed.  So it’s very likely that microscopic bits of it still remain.

There was an initial pathology analysis done, but I’m not going to share the results because we’ve been told that the full workup could tell a very different story.  Apparently, some tumors can look like other tumors at first glance, as it were, and the tumor type and grade that they initially identified is really rather frightening.  Regardless, we don’t know for sure what we’re up against, and won’t for a few more days.  We don’t know how much ongoing treatment she will require.  It could be a lot, a long road of courses of chemotherapy and radiation bombardment that will sear cells and sicken her in an attempt to kill the tumor before it kills her.  Or she might need no further treatment at all.  Not really counting on that last one, though.

The problem is that even with the tumor removed and an alternate drainage path already created, Rebecca’s intracranial pressure is not staying down.  Even worse, the drainage line that extends from the back of her skull cannot be set at too high a pressure level, or else cerebral fluid starts to leak around it onto the sheets.  Worst of all, at least from my perspective, her energy and behavior levels aren’t correlating to the pressure levels in the expected way, which is a real mystery.

So tomorrow morning is another MRI, and the day after that will almost certainly mean another round of surgery—either to reopen the drainage channels in place, or to install an artificial channel that will drain fluids from her brain and dump them in another spot in her body.

Apparently that’s a thing.

Thus she faces her third major surgery in four days, and at this point we can’t even feel like we know that that’s the end of them.  For all we know, she might need a fourth surgery, and then a fifth, and on and on.  Not only are we uncertain about the true nature what grew in the center of her brain, we’re uncertain about when she can finally start healing.  Our daughter’s life is in obvious peril, all while we lack even the most basic information about when and how we can help her fight to keep it.  It is a special form of parental hell, one that cannot be fully understood even by those who live it.

And yet, today she was able to whisper a few words at a time to us through the fog of her exhaustion, telling us what she wanted to drink and responding to questions.  She was able to hold and eat a popsicle without any assistance.  She smiled as best she could at Kat’s silly faces and in response to visits from grandparents and friends.  She played blinking and hand-squeezing games with me for a while.  Later, she was able to kick off her covers and endanger her arterial line.  She was, for all her lethargy, recognizably herself.

Three steps forward, two steps back.  It is progress, but progress of a cruelly exhausting kind.

Lend Us Your Strength

Our five-year-old daughter, Rebecca, is currently between major surgeries at The Children’s Hospital of Philadelphia.  We were on vacation in south New Jersey when what seemed to be a serious bout of strep throat turned out to be a large brain tumor.  She was airlifted from the regional medical center in Cape May to CHOP and is resident in the PICU, as are we.  This afternoon, the surgeons were able to relieve her elevated intracranial pressure by creating an alternate drainage path for the fluids that the tumor had obstructed.  Tomorrow, she will undergo a craniotomy to resect as much of the tumor as possible as well as biopsy it to see exactly what we’re up against.

I do not know, as I write this, where we will be in 24 hours.  The possible outcomes quite literally range from death to complete long-term recovery with no serious side effects.  Everything depends on what they find in her head tomorrow, and how much of it they can remove, and how the removal process goes.  Until we know that, we know only that she is still herself and that she has incredible care here at CHOP.

We are well covered for help.  We have friends and family here to help us and our other children.  But we—me, my wife Kat, Rebecca’s siblings Carolyn and Joshua, and our extended family of relatives and honorary relatives—could really use your support.  Warm thoughts, positive vibes, heartfelt prayers, just keeping us in mind…whatever works for you will work for us.

She is so small, and so strong, and we are so scared.  Any thought you can spare us is more than appreciated.

Update 17 Aug 13: Rebecca’s surgery went very well, almost optimally well.  I’ll post about it soon, when I know more details.  Thank you all so much.

If Harry Befriended Sally

I really want to see a mainstream Hollywood movie, preferably with stars in the lead roles, that goes basically like this:  a couple of single people meet cute, become very good friends, meet and fall in love with other people, and stay very good friends.  The End.

It’s been pointed out to me that this is basically the Harry Potter series, which causes me to applaud J. K. Rowling all over again…but note that I said “movie”, not “movie series”.  That is to say, while I love that Rowling resisted having Harry and Hermione hook up, I’d like to see that same sort of arc played out over ninety minutes, not nineteen hours.

Here are some other limits I would place on my ideal movie:

  • The friends never have sex.  Not even drunken one-night-stand sex.
  • In fact, they never even date.  They hang out and do stuff together, but the way that people hang out and do stuff with people they aren’t dating.
  • Related: neither of them develops a crush on the other.  Their love for each other is that of really good friends, period.
  • Possibly optional: show through various grace notes in the scenes that while these are great friends, they wouldn’t work well as a romantic couple, and that they realize and are totally fine with that.
  • Their friendship is not broken or externally threatened.  It’s okay if they argue and even fight from time to time—friends often do.  Misunderstandings are part of any relationship.  Show those, but don’t make it into some kind of world-shattering drama or seem like they’re going to part ways.  Just normal human struggles.
  • Related: neither of them hates or is jealous of their friend’s choice of romantic partner, and vice versa.  I’m not going to insist they all four become super-best friends, but what we’re looking for here is healthy (if imperfect) relationships all the way around.

In a lot of ways, this would look like When Harry Met Sally… without the sex and the stuff at the end.  I’m not saying it’s exactly that, because it’s been a long time since I saw that movie and there may be other things that would need to change.  But, in a broad sense, that.

Why do I want this?  Because I’m really tired of seeing movies (and TV shows and video games and on and on) that essentially insist that any two people who could potentially fall in love must fall in love.  Or even just lust.  Those things are not requirements of all human interaction, and I’d like to see—even if it’s just once—something that looks like a rom-com, but ends up being something a lot more interesting and true to life.  Even more, I’d like my children to see it.  They see it in real life, but a little extra backup wouldn’t hurt.

If anyone knows of a movie that meets these criteria, whether Hollywood-based or not, I’d love to know about it.

Ciao, Camino

It’s been obvious for a long time that Camino was withering away, but they’ve formally called an end to the project:

After a decade-long run, Camino is no longer being developed, and we encourage all users to upgrade to a more modern browser. Camino is increasingly lagging behind the fast pace of changes on the web, and more importantly it is not receiving security updates, making it increasingly unsafe to use.

I used Camino for a long time, and only left when it had lagged much too far behind the rest of the browser market.  (Camino used Gecko embedding, which was disabled a couple of years ago.  That change effectively froze Camino’s rendering engine at the level of Firefox 3.6.)

When I migrated away from Camino, I tried a few alternatives and eventually settled on Firefox because its UI was the least unlike Camino’s.  (We like best what we know best.)  There were still some things I sorely missed, though, like simple Flash blocking and whitelisting, the multi-row Bookmarks bar, the keyboard bookmark-activation shortcuts, and the truly great downloads manager.  If you miss those (or would like to experience them) too, here’s how I got them back in Firefox:

  • Flashblock — though its UI isn’t quite as easy as Camino’s Flash preferences, Flashblock works well and allows whitelisting.
  • Multirow Bookmarks Toolbar Plus — the layout of this has gotten a bit wonky under recent Firefox Nightly builds, but still works just fine, and you can even set it to auto-hide itself.
  • Bookmark Shortcut Keys — built for me in Jetpack by Jeff Balogh, this lets you define which keyboard shortcuts trigger the first nine bookmarks in the Bookmarks bar.  I use this all the time, just as I did in Camino.  I’ve defined my shortcuts to be ⌘1 through ⌘9, but you can pick whichever modifier keys you like.  Thanks, Jeff!
  • Download Manage Tweak — adds controls to show a file in the OS, delete the file, remove the file from the list without deleting it, and so on.  As with Flashblock, it isn’t quite as smooth as Camino’s UI, but it does the same job and a bit more besides.

And one more: New Tab Homepage, which makes certain that Firefox loads your Home page, and not the dashboard, whenever you open a new tab.

Oh, all right, one more one more: RSS Icon in Awesombar.  If you still roll that way.

So if you still pine a bit for Camino’s UI features, there’s how you can recreate most of the experience in Firefox.  If you don’t, then peace be with you, as with the entire Camino team.  Thank you all for everything you did to bring OS X a great browser that just felt right.

Collective Editorial: the Plugin

As I was reading an article with a few scattered apostrophe errors, I wished that I could highlight each one, hit a report button, and know that the author had been notified of the errors so that they could fix them.  No requirement to leave a comment chastising them for bad grammar, replete with lots of textual context so they could find the errors—just a quick “hey, I spotted this error, now you know so you can fix it” notice, sent in private to them.

Then I realized that I wanted that for my own site, to let people tell me when I had gaffes in need of repair.  It’s an almost-wiki, where the crowd can flag errors that need to be corrected without having to edit the source themselves—or have the power to edit it themselves, for that matter, which is an open door for abuse.

I haven’t thought this through in tons of detail, but here’s how it feels in my head:

  • Visitors highlight a typo and click a button to report it.  Or else click a button to start reporting, highlight a word, and click again to submit.  This part is kind of fuzzy in my head, and yes, “click” is not the best term here, but it’s one we all understand.
  • Interesting extra feature: the ability to classify the type of error when reporting.  For example: apostrophe, misspelling, parallelism, pronoun trouble.
  • Other interesting extra feature: the ability to inform users of the ground rules before they report.  For example: “This site uses British punctuation rules, the Oxford comma, and American spelling.”  (Which I do.)
  • The author gets notice whenever an error is reported, or else can opt for a daily digest.
  • Each notice lets the author quickly accept or reject the reported error, much as can be done with edits in MS Word and similar programs, along with a link that will jump the author straight to the reported error so they can see it in context.  If rejected, future reports of that word are disabled.  If accepted, the change is made immediately, without requiring a dive into the CMS.
  • When an error is reported, future visitors to the site will see any already-reported errors in highlight.  This keeps them from reporting the same thing over and over, and also acts as incentive to the author to fix errors quickly.  (The highlight style could be customizable.)
  • Reports can only happen at the word level, not the individual letter level.  So reporting an “it’s” error highlights all of “it’s”, not just the offending apostrophe.  Perhaps also for multiple words, though only up to a certain number, like three.  And yes, I’m keenly aware of the challenges of defining a “word” in an internationally-aware manner, but perhaps in ideographic languages you switch to per-symbol.  (Not an expert here, so take that with a few grinders of salt.)
  • The author can optionally limit the number of reports permitted per hour/day/whatever.  This could be enforced globally or on a per-user basis, though globally is a tad more robust.

That’s how I see it working, after a few minutes’ thought.  It seems pretty achievable as a CMS plugin, actually, though I confess that I don’t have anywhere close to the time and coding chops needed to make it happen right now (or any time soon).  The biggest challenge to me seems like the “edit-on-accept-without-CMS-diving” part, since there are so many CMSes and particularly since static sites are staging a comeback.  Still, I think it would be a fun and worthwhile project for someone out there.  If somebody takes it on, I’d love to follow along and see where it ends up, particularly if they do it for WordPress (which is what the blog hereabouts runs on).

October 2014
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