Thoughts From Eric Archive

Assuming all goes according to plan, we have just one week left before the radiation treatments stop and we can go home.  Assuming no delays, next Monday morning we will place Rebecca into the path of the proton beam for the last time. 

In the past couple of weeks, there have finally been external signs of the process.  All along one side of her head, the side where the stream of protons enters her skull at 100,000 miles per second, nearly all the hair has fallen out.  This is a good sign: it means that the radiation is doing what it should be.  The cells in hair follicles, you see, are very much like cancer cells: always dividing.  The radiation and chemotherapy kill cells that are in the act of division.  They don’t discriminate beyond that, so any cells that are dividing the way they should be — say, growing hair — get hit the same as the cells that are dividing the way they shouldn’t — like cancer cells.

When her hair is washed and down and its glorious curly self, you can hardly see the missing area.  Anyone who didn’t know her as well as we do would probably assume the lopsidedness of her hair was a style choice.  It’s only when the hair is braided, as we do each morning to pull it out of the beam’s path, that you can really tell.

As for her personal energy, well, when her hair is down, new families at the Ronald McDonald House think she’s the sibling of a kid in treatment instead of the actual kid in treatment.  She skips and jumps and dances through life just as brightly as ever, playing silly wordplay games, swiping stuff from our pockets and laughing at her own cleverness.  She’s still five, so it’s not always fun and games; imagine a fiercely strong-willed child pushing back against a change of household, never mind a bunch of unwanted medication and treatments and new people all the time, and then add being away from her siblings for weeks at a time.  She has smooth days and rough days, and of course Kat and I also have smooth days and rough days, so the hope every morning is that no more than one of us has a rough day ahead of them.

As of the pre-dawn hours in which we got up to come to the hospital this morning, there were just five radiation treatments left.  Next Monday morning, after she wakes up from the sedation, we will retrieve our car from the hospital valet and head west.  As long as there are no schedule delays that morning, and no horrible traffic delays along the length of Pennsylvania, we should be home just in time for dinner.

Home.  It almost seems like a myth.  We did a Facetime session the other day and when I glimpsed some of the living room and sun room in the background, it took me a second to recognize it.  I wonder if it will take us a day or two to re-adjust to living in our own house.

• One Week was published on Tuesday, October 22nd, 2013.
• It was assigned to the Cancer and Rebecca categories.
• There have been seven replies.

As a followup to the recent public-speaking post, I want to talk about what’s happening with CSS: The Definitive Guide, 4th Edition.  So I will!

As many of you know, O’Reilly and I have been trying a new serial publication approach in which pieces of the book are released as they’re finished, generally at the ratio of one chapter per “pre-book”.  There are now five such books covering the first six chapters of the final book:

• CSS and Documents, which covers the raw basics of how CSS is associated with HTML, including some of the more obscure ways of strapping external styles to the document as well as media query syntax.  It’s free to download in any of the various formats O’Reilly offers.
• Selectors, Specificity, and the Cascade, which combines two chapters to cover all of the various Level 3 selector patterns as well as the inner details of how specificity, inheritance, and cascade.  It’s $4.99 to download, $9.99 to get on paper, and $10.99 to get both.
• Values, Units and Colors, which covers all the various ways you can label numbers as well as use strings.  It also takes advantage of the new cheapness of color printing to use a bunch of nice color-value figures that aren’t forced to be all in grayscale.  $2.99 to download, $7.99 to print, $8.79 for both.
• CSS Fonts, which dives into the gory details of @font-face and how it can deeply affect the use of font-related properties, both those we use widely as well as many that are quickly gaining browser support.  $5.99 to download, $7.99 to print, $8.79 for both.
• CSS Text, which covers all the text styles that aren’t concerned with setting the font face — stuff like indenting, decoration, drop shadows, white-space handling, and so on.  $3.99 to download, $4.99 to print, $5.49 for both.

If you’re curious to know what other people think of these pre-books, all of the above except for “CSS Documents” and “CSS Fonts” have some customer reviews; “CSS Fonts” was recently reviewed by Virginia DeBolt.  If anyone who already has one wants to leave a review here in the comments, that’s fine too, though I’ll probably ask you to submit said reviews over at O’Reilly.

Given that all those are out, what’s next?  If I were to go by final-book-table-of-contents order, the next chapter would be “Basic Visual Formatting”, but I’m not going to do that, which is one of the big advantages of this approach.  Instead, my next topics are going to be transforms, transitions, and animations, and then flexbox.  Of course, all such plans are subject to change, but those are the topics I really want to do next, and they’re probably the most relevant topics to be talking about right now.

Given everything happening in my family’s life right now, I’m not going to try to commit to a specific schedule, because I might have to drop everything at next to notice at random.  All I can say is that I’ll be getting them out as soon as I can.

• Guidepost was published on Wednesday, October 16th, 2013.
• It was assigned to the CSS and Writing categories.
• There have been two replies.

We now (sort of) interrupt the stream of Rebecca updates for a professional update.

Given the situation with Rebecca, I’ve obviously had to make some serious adjustments to my speaking and travel schedule.  I had to cancel my appearance at the CSS Dev Conference later this month, which is a bit of a shame since I was looking forward to taking the hotel elevator at night, soaking up the CSS genius from all the other speakers, and connecting with some college friends I haven’t seen in almost 20 years.  I also had to withdraw from the CERN Line-Mode Browser Dev Days, which was a real letdown for me as an amateur web historian as well as a high-energy physics fanboy.

I also had to drop myself from the remaining An Event Aparts of 2013, as well as first few of 2014.  The reason for the extended withdrawal from the AEA stage is that in the event the cancer treatments fail and the cancer returns, the odds are very high that it will do so in the first year after diagnosis.  That first year is also the period in which Rebecca will be getting some fairly strong chemotherapy, and is likely to be in and out of the hospital on a semi-random basis.  It would be unfair to pretty much everyone I can think of for me to commit to a bunch of speaking and then cancel some of it at the last minute.  I’m sorry to be absent at my own show, but life can be like that sometimes.  Like now.

I am, on some level, sorry that I had to cancel so many events.  Not that I feel like I made any choices for which I have to apologize, of course.  I’m just sad about the way life turned, and wistful for the missed connections-that-would-have-been.

This doesn’t quite mean that I’ll be total hermit, though: I have two talks happening this month, one in Philadelphia and the other in Cleveland.

The first is an evening talk at Drexel University in Philadelphia on Wednesday, 23 October.  This will be a modified version of the talk I gave at AEA earlier in 2013, tuned for the web design students who will be in the audience but of interest to anyone (who hasn’t already heard it).  It’s now called “<strong> Layout Systems”, and we’ll be kicking things off at 7:00pm, with a completely open-topic Q&A immediately after the presentation.  The event is free and open to the general public, so if you feel like dropping by the Drexel campus that night, I’d love to say hi!

A few days after that, I’ll be speaking at the CWRU ACM chapter’s Link-State 2013 conference, October 26-27.  My topic will be CSS fonts and the crazy, crazy things you can (or can’t) do with them in current browsers.  The prices are pretty great — free for CWRU students, $10 for everyone else — so if you feel like dropping by the CWRU campus the weekend before Halloween, I’d love to say hi!

Basically, I’d love to say hi.

Next up should be an update on the writing side of my professional life, including what’s next (and what’s already available!) for CSS: The Definitive Guide, 4th Edition.

• On Stage and Off was published on Monday, October 7th, 2013.
• It was assigned to the An Event Apart and Speaking categories.
• There have been three replies.

We’re now a full two weeks into Rebecca’s proton therapy and, possibly due to the near-total resection of her tumor and definitely due to the specific chemotherapy regimen she’s using, you’d be hard-pressed to tell that anything is or ever was wrong with her.  Her energy and spirit continue to burn as bright as ever.  She jumps and cavorts and storms like any child of her age and temperament.  Sometimes, it’s very hard to believe that all these things are actually necessary.

Updates have been more sparse of late in part because of the ceaseless parade of specialist appointments and other demands on our time, but also because we realized our eldest daughter is reading what I write, and that’s something I have to take into consideration.  Our family may be split between two cities, but we are still a family, and the balancing act of being a family continues, as it must.

Tomorrow Team Becca is going to be a very strong presence at the 2013 Northeast Ohio CureSearch Walk for Children’s Cancer.  If you’ve contributed to the team, thank you so much; we really, really appreciate the overwhelming support.  If you’d still like to donate or join us, please do!  We’re close to 40 team members and $10,000 raised, and crossing either of those thresholds would be fantastic.

• Two Weeks was published on Friday, September 27th, 2013.
• It was assigned to the Cancer and Rebecca categories.
• There have been seven replies.

A week into proton therapy, we’ve settled into a routine.  It’s a much earlier routine than we’re used to, but we’re all adjusting.  Ordinarily I’d qualify that with “about as well as could be expected”, but I don’t know if that’s strictly true.  What does one expect?  And anyway, I think we’re just adjusting, period, no qualifiers.

It all starts a couple of hours before sunrise, when we administer a staggered series of three medications.  Or at least we did; now, for the most part, Rebecca administers them herself, once we’ve managed to wake her up enough.  The first medicine keeps the second from making her throw up, and the third keeps her brain from crashing.  Assuming it’s needed at all, that is; we don’t know, but can’t take her off it long enough to find out.

The mornings are devoted to proton therapy and recovering from the sedation, and then afternoons are a mixture of meetings with specialists and spending time in stores, parks, playgrounds, and so on.  Rebecca is as spunky and mischievous as ever, with only minor physical evidence of possible side effects.

And then, after dinner and some quiet time, we all go to bed.  Kat and I are slowly synchronizing to the new early-to-bed-early-to-rise schedule, which means that we’re a little less exhausted every day.  This is a bigger deal than you might imagine.

That’s the story so far, anyway.  People ask me how I’m doing, and my answer now is always the same: “One day at a time.”  We don’t know what tomorrow will be like, which has always been true, but now we’re very sharply aware of exactly what that means, which was not always true.  Tomorrow a proton beam might rob her of her ability to write, or to remember her last birthday, or to run in a straight line.  Tomorrow might bring a drug reaction that causes a badly itchy rash, or trigger blind-panic anxiety, or make her extremely loopy.

Or tomorrow might instead bring us another day like today, except with the combination of medicine and radiation burning away a bit more of the cancer without noticeable damage to any of the tissue around it, and the rest of the day spent with a strong, willful, laughing little girl.  Tomorrow might be, probably will be, what the past week of tomorrows have been: one more forward step on this new and unexpected road.

• Tomorrow and Tomorrow was published on Thursday, September 19th, 2013.
• It was assigned to the Cancer and Rebecca categories.
• There have been seven replies.

Tomorrow begins a long and dangerous road, one we’re lucky to be able to walk at all.

We’re back in Philadelphia to start almost seven weeks of proton radiation therapy, which will attempt to burn away the cancerous cells in Rebecca’s head without burning too much of the brain matter that surrounds them.  That’s the danger: the brain matter in question is the brainstem, thalamus, and fornix.  These are all, in the words of several of the specialists who’ve talked with us, high-value real estate.  Too much damage there could cause serious side effects.  And my use of the word “serious” in that sentence may constitute one of the greatest understatements of my life.

This is why we are undergoing proton therapy as opposed to any other form of radiation therapy: we are told that proton therapy is “more brain-sparing” than its irradiating cousins.  In other words, it’s the technique that gives us the most cancer-burning for the least brain-burning.  Or so we are told.

In all likelihood, “least” does not mean “none”.  Thus the concern about possible side effects; that is to say, neurological damage, which (if it occurs) may or may not be significant, and may or may not be permanent.  There is no way to know until it happens, or possibly doesn’t happen.

These are the dice we are forced to roll.  We must bet our daughter’s cognitive abilities against her continued survival, her mind against her life, and hope against desperate hope that none of the die lands with a skull face-up.

As I say, we’re lucky to have the opportunity to possibly inflict brain damage on our child, because having that opportunity means the cancer is weak enough that there is a decent chance of eliminating it completely.  If the doctors can do that, she can actually grow up and learn to cope with whatever side effects there might be, or maybe even have her growing brain interpret the damage as deficit and route around it.  She will be able to become whoever she will, and if that isn’t who she would have been without the cancer and radiation, well, that’s unescapable now.  Even if there are no physiological side effects at all, she will still never be who she would have been.  This whole experience will profoundly shape her, and the rest of us as well.

All of which is really unremarkable, in its way.  We all extinguish an uncountable number of possible future selves every day of our lives, and never mourn.

As I type this, Rebecca is unwinding from the long drive here with a favorite video.  Part of me wants to go over there, stop the video, and spend all night holding and talking with her.  But she is a spirited, defiant five, and would probably end up throwing a (deserved) tantrum at me for messing with her and boring her to tears and possibly scaring her a little.  Because she is already far too painfully aware of her own mortality, in a way that no child should ever have to experience.  I have no right, and less desire, to force that awareness even further into her life.

We don’t know what lies at the other end of this stretch of the road, but must walk it anyway, because we know beyond doubt what lies at the other end of the other road, the one our hearts want us to take, the one that leads away from proton beams and chemical cocktails and pain and fear and so many unknowns, but also away from the possibility of a full life.

I hope she can one day forgive us our choices.  I hope we can one day do the same.

• High-Value Real Estate was published on Wednesday, September 11th, 2013.
• It was assigned to the Cancer, Parenting, Personal, and Rebecca categories.
• There have been seventeen replies.

Some of our Cleveland friends have organized “Team Becca” as part of the 2013 Northeast Ohio CureSearch Walk for Children’s Cancer to be held in University Circle on the morning of Saturday, September 28.  If anyone would like to join and walk the 1.75 mile course, please do; if you can’t join as a walker, please consider making a small donation to the team as a show of support.  It would be much appreciated.

Kat and I hope to participate in the walk with Rebecca, but we won’t be able to commit until a week or so before the event.  Basically, until we know our exact schedule and how Rebecca reacts to the sedation-and-radiation-and-chemotherapy regimen, we can’t commit to much of anything.  But our friends will be there, and hopefully some of you will be there (either in person or in spirit), and if at all possible we’ll be there too.

• Team Becca was published on Thursday, August 29th, 2013.
• It was assigned to the Cancer, General, Personal, and Rebecca categories.
• There has been one reply.

All things considered, we were incredibly lucky that Rebecca’s brain tumor emerged on vacation.  We were incredibly lucky in so many ways that it almost defies believability.

For starters, because we were in New Jersey, Rebecca was transferred to The Children’s Hospital of Philadelphia, which is very likely the absolute best place she could have been treated for her particular problem.  I sent a copy of her MRIs to a cousin of mine who’s a highly respected radiologist, and he showed it to a colleague, and they both can scarcely believe how much of the tumor was removed.  It’s essentially a total resection in an incredibly risky and difficult-to-reach area of the brain.

Anywhere else, with any other surgery team, there might have been more of the tumor left in her head, leading to significantly lower odds of long-term survival.  Furthermore, CHOP is one of the few places in the country with a proton radiation facility, which allows us continuity of care in a great program, and they are participating in a study of chemotherapy/radiation therapy combinations that could raise the odds even further.  This is the place that will give her the best shot at complete elimination of the cancer.  If we’d been at home, it’s incredibly unlikely we’d have come here.  Even if it had been suggested, Rebecca would have been far too ill to transport so far.  Instead, we transported her within range of CHOP in the family minivan just before (or even as) her symptoms began to manifest.

Just as lucky is that we were on vacation and so able to pay closer attention to Rebecca’s initial symptoms over periods of time unbroken by work or errands.  We were deeply in tune with what was going on, and so Kat knew when it was time to go back to the emergency room.  That’s where Rebecca’s seizures happened, and the ER staff responded instantly and flawlessly, which means she was stabilized in the minimum possible time.  That very well may have spared her, neurologically; in those situations, every second counts.  If we had been out of the ER, or maybe even in a different ER, she might not have fared so well.  If we had been in Cleveland, given the time that she seized, we might well have been driving her from the pediatrician’s office to the ER.

Then there was the logistical luck.

Kat’s high school friend Lisa, who lives just north of New York City and was already planning to come with her daughter to join us for the second week of our vacation, was able to come south as soon as she got our call, even before we knew exactly where we wanted her to go.

Even more incredibly, our very good Cleveland friends Gini and Ferrett were on the road, on their way to a convention in New England, and were paying the toll at the Tappan Zee Bridge when I called them with the news.  They immediately turned around to head south as well, and arrived at our vacation rental exactly the same time Lisa did.

We sent everyone there instead of Philadelphia so they could take care of our children Carolyn and Joshua, who were being watched by a sitter who turned out to be someone we already knew.  Kat and I had already left for Philadelphia, driven there by the woman who runs the sitter service we’ve always used on our vacations in New Jersey.  We didn’t even ask.  We were still trying to figure out how to get to Philadelphia when she found us a sitter — her own daughter — who could stay until our friends arrived, and then volunteered to drive us to CHOP so we could be with Rebecca, to support her and each other.  Even after all those years of using her service, that evening was the first time we’d actually met in person.

The kids came up to CHOP with Lisa, Gini, and Ferrett the next morning, bringing the whole family together.  Everyone needed a place to stay, and lo: Kat’s cousin Wendy and her family, who live 20 minutes west of Philadelphia, were leaving that same day for a week of their own on the Jersey shore.  They offered their house without a second thought, allowing everyone to stay less than half an hour away instead of five times that distance.

And further, the fact that it was late summer made it possible for more people to come to our without being hampered by the weather or school being in session and so on.  My parents could make the drive from Florida to Philadelphia on a moment’s notice, pushing through the entire 15-hour trip, and stay with us for almost a week.  Kat’s friend Dena could take the Acela down to help out the very next morning, mere hours after we’d arrived at the hospital.  Our friends Jen and Alyx were able to drive from Cleveland to Philadelphia later in the week to give Rebecca’s brother and sister more familiar faces.  Our various friends were able to get Rebecca’s siblings back to the shore so they could finish their vacation, away from the constant stress of the hospital, and they were able to meet up with Kat’s cousin’s family for a night on the boardwalk.

Everything came together.  So much support assembled in so little time with so few roadblocks that it still amazes me just a bit.

All things considered, I’d rather my daughter had never had a brain tumor, especially one so rare, in the first place…but given that she did, we are so, so lucky that it emerged on vacation.

• So Very Lucky was published on Wednesday, August 28th, 2013.
• It was assigned to the Cancer, Personal, and Rebecca categories.
• There have been eleven replies.