Posts in the Cancer Category

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.

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.

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.

• A St. Baldrick’s Appeal From Carolyn was published on Wednesday, February 26th, 2014.
• It was assigned to the Cancer and Carolyn categories.
• There have been eight replies.

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.

• Bill Killed was published on Monday, February 17th, 2014.
• It was assigned to the Cancer category.
• There have been three replies.

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?

• Kill Bill was published on Friday, February 14th, 2014.
• It was assigned to the Cancer and Rants categories.
• There have been nine replies.

My last entry about Rebecca and her chemotherapy was unexpectedly — well, I suppose “popular” is the technically correct term, though it carries a lot of positive connotations that I really don’t think apply.  It drew a fair bit of response and social-media sharing, anyway.  As a result, I wonder if I left new (or even returning) visitors with the wrong impression.

So let me be clear: Rebecca is not necessarily dying soon.  We don’t have a “time left to live”, not even a hint of it, because the goal of her treatment is to eradicate the cancer and give her many, many years of life.  So far, we seem to be on track for that, though of course we can never really know (but then, who can?).  Her outburst about not ever being eight was not because she’d been told that she might die soon.  We were deeply shocked to hear her say it.  We know that kids hear more than we think they do, and we know she’s whip-smart, which is why we tried very hard not to talk about her survival odds in her presence.  Still, it’s easy to think that someone of Rebecca’s youth doesn’t grasp the idea of mortality.  We thought that she knew it was serious but not that her life was in ongoing danger.  We were wrong.  A few days ago, she told Kat that she’s afraid to die because it would hurt me forever.  She’s not wrong.

Then again, given her age and intelligence, maybe she would be having these sorts of thoughts anyway.  We’ll never know if it was forced on her early by her cancer, or if in a world without cancer she would have thought the same thing at the same age.  It’s too easy to put a “because cancer” label on every moment of breathtaking insight, every time she steals our breath with her wisdom and her fears, every outburst of irrational rage.  We try really hard not to do that, because doing so cheats her of her agency and keeps us from seeing her for herself in all her facets.  We have a child, not a patient, and if it seems like that would be an easy distinction to maintain, it isn’t.  Not even to those who have lifelong experience maintaining it.

That said, most of the time she’s a normal five-year-old kid, as full of joy and mirth and energy as ever.  She’s tolerating the chemotherapy pretty well; her side effects so far are minimal, with no vomiting or other major GI problems, and she even still has a mostly-full head of hair.  Sometimes she gets listless or feels wrung out after treatment, but not always.  She had a bi-weekly intravenous treatment yesterday, in fact, and after dinner she was charging around the house with her brother and sister, laughing like a maniac the whole time.

And we let her, even though we probably shouldn’t have.  Her treatment yesterday went fine, and her blood test came back with some really great numbers.  The down side was that when we mentioned she had rebuilt her physical strength and skills to the point where her gym class coaches wanted her to move up to the pre-team class and start coming twice a week, the oncology team had to give us some bad news.  One of her chemotherapy agents tends to weaken bones during treatment, and also multiply the chances of internal bleeding after blunt-force injury — like, say, falling off a pommel horse and striking the mat with her head.  Or possibly fracturing ankle or leg bones with a dismount landing, or splintering vertebrae in a somersault.  So no gymnastics, they said.  Or, more accurately, they said that we have a choice: we can stop the gymnastics or stop the chemotherapy.

We cried a little bit as we told her, knowing how much she loves gym class and being there with her best friend.  Rebecca did not cry.  She just looked sad, and then insisted she only wants to go to school, not to gym.  We probably cried a little bit more at the near-certainty that she was lying to try to protect us, which is heartbreaking all on its own, just as it was to hear of her fear of hurting me forever.  We should protect her.  Never the other way around.

Yet another case of three steps forward, two steps back.  Just when we thought we were going to be able to add another bit of normalcy back, that door was closed to us.  In some ways that makes it even more frustrating, to see the goal so close ahead and then watch it slip far away.

I wish we could say that we are unique, or that our situation is as terrible as it ever gets.  Neither is anything remotely like being true.  Thousands upon thousands of children the world over are afflicted with life-threatening conditions like cancer.  Some of them have much better odds than Rebecca; others have far worse.  Some lay in bed all the time, without the energy to sit up, let alone play with siblings.  Some have no immune system left, others no appetite at all, still others live in constant pain.  Some are already terminal, and if you want to know what I believe is the absolute hardest thing a parent can ever do, it’s to tell your son or daughter that they will die very soon, and then sit helpless with them and their siblings as they do.  Superman Sam’s parents recently went through that hell.  They had to bury their child’s body and stand at his graveside with their other children.  As thousands of parents must, every day.

I cannot imagine how they survive, a month now after their son died.  I know how they survive, but I can’t imagine doing it myself.  I can’t imagine finding the strength to do it, even as I know that I would, because I would have to.  That’s what I tell people when they say they could never be as strong as us in this situation: yes, you could.  You would.  You’d do it because you had to, and wish hard for the day that you could stop.

So yes, our lives are much different and demand more strength now, and we often have to hear and do things that break our hearts, but it could be so very much worse.  We have hope where too many are long past that point, support and love where too many have little of either.  Our difficulties are like a mill pond compared to the ocean of suffering that others endure.  If you would spare a thought or a prayer for our difficulties, spare ten for theirs.  Spare them more tangible support, if you can.  All we have are each other, and only we can help those who so desperately need it.

• Care and Strength was published on Friday, January 17th, 2014.
• It was assigned to the Cancer, Parenting, and Rebecca categories.
• There have been four replies.

Last night, not for the first time and probably not for the last, we made our five-year-old choose between drinking poison and having us force it down her throat.  We did so calmly, patiently, quietly, never raising our voices or becoming angry.  We’ve had too much practice at this to make the mistakes of the early days.  Perhaps with more practice we can somehow find a way to make it a game, some way of making it all easier.  For now, we simply let her know, with quiet patience and love, that this is not optional, and if she doesn’t take the poison herself, we will make sure it gets into her.

It isn’t always a long struggle.  Some days she poisons herself without complaint, getting it over with in order to get on with life.  But not very much, of late.

The poison in question is temozolomide, a chemotherapy agent that’s specifically used to treat brain tumors.  I once read the label, with its biohazard trefoil, and stopped when I saw the word “cytotoxin”.  That means “cell poison”; it attacks cells that are dividing, as cancer cells always are.  But it attacks all dividing cells, not just malignant ones.  A growing five-year-old has a lot of dividing cells, and we are poisoning them all.  We just hope that we’re poisoning the cancerous brain cells more than other cells.

But her brain is trying to grow, too.

Temozolomide is an oral medication, usually in capsule form.  However, for kids who haven’t learned the trick of swallowing four large capsules in quick succession, its toxins are suspended in a gooey liquid compound that tastes vile.  I know; I tasted it, so that I could better understand her struggle.  Worse still, it can’t be flavored.  We’ve asked — begged — more than one pharmacist, but it cannot be combined with flavoring agents.  So she takes her poison straight.  At home.  For days at a time.

When she asks why she has to take something that’s “too icky”, we remind her (even though we know she knows why, just as we know why she asks) that it’s to keep the “bad rocks” from coming back.  That term is a holdover from when Rebecca was three and Kat had to have some masses removed from her abdomen, and “bad rocks” was the best way to explain to Rebecca what was being taken out of her mommy.  We thought she was too little to have to worry about cancerous growths, so we simplified things to make sense to her.  We still think she’s too little to have to worry about cancerous growths, but we can’t be euphemistic any more.

And if we ask her what will happen if the bad rocks come back, she says, “Not telling” in a small, scared voice.  This is actually a common reply from her, but usually it’s said with a smirk and a gleam in her eye, the one that kids get when they think they’re getting away with something and it seems like the biggest joke in the world.  When she refuses to tell us what will happen if the bad rocks come back, it’s because she understands all too well.  She understands better than we can bear.

We know she understands because when we were home between her surgeries and the radiation treatments, twelve days of having the family together in the midst of everything, Rebecca got very mad at her sister for not letting her play with a toy.  “It’s for kids eight and up,” Carolyn said, reasonably.  Rebecca, of course, found this line of reasoning lacking, and came storming into the kitchen.  “Carolyn won’t let me play with that toy and I have to play with that toy!” she shouted.  We explained that it was in fact for older children, and that she certainly might want to play with it, but that wasn’t the same as having to play with it.  “I have to!” she shouted again, her voice rising almost to a scream, breaking with angry, anguished sobs, “I have to play with it now because it’s for kids who are eight years old AND I’M NEVER GONNA BE EIGHT!!!”

I can think back to the first days of her illness, lying almost unconscious with so many tubes leading into and away from her, with relative dispassion, as if analyzing a movie.  It might even seem like I’m doing that right now.  But that moment of anger and fear erupting from our five-year-old daughter brings me to tears every time I remember it.  I’m typing this part with tears streaming down my face; it’s taken me this long to be able to come to a place where I can write about it at all.  Even now, I want to throw up.  I want to die, if that could somehow save her.

Instead, I have to, we have to, make her poison cells all throughout her body and especially all throughout her brain in the hopes of killing off the cells that might kill her.  All the other cells that die in the process, the good cells that are trying to grow more curly hair and develop her brain and lengthen her bones and help her grow up, are collateral damage.  We tell ourselves that those innocent, beneficial cells are acceptable losses, and hope that it’s true.  We hope that the damage we do trying to save her doesn’t end up killing her later.

In the end, she took the medicine herself, as she always does, choosing to be in control of how things happen to her.  It took several false starts; for each, she calmed herself by sitting up straight, closing her eyes, and taking a deep breath.  And then, as soon as the syringe touched her lips, she crumbled back into sobs, her body shaking with visceral rejection and misery.  Not anger, even though it would be easier for us if she hated us for what we keep doing to her.  If she blamed us for making her do this.  It would be easier to be targets of her anger than witnesses to her hopeless, knowing, abject misery.

Finally, after all those tries and stalling tactics, she made her choice.  She squared her shoulders, slowly put the syringe to her lips, and pushed the plunger, drinking it all down in two audible swallows.  She then immediately drank half a cup of Gatorade in an effort to mask the taste.  She doesn’t usually like Gatorade, but it’s what she asks for to go with her chemotherapy.  So we give it to her.

But only after she’s poisoned herself.

People ask us how we’re holding up, and when we say we’re doing pretty good, we’re being honest.  We know that we’re lucky to have to poison her, just like we were lucky to have to irradiate her.  We’re beyond grateful for those opportunities.  We are.  But we’re also painfully aware of the nature of what we’re doing.  We feel every last drop of the horror it is to be grateful to be damaging our baby; to have the good fortune to force her to choose, day after day, whether she will poison herself or we will do it for her.

• The Choice was published on Saturday, January 4th, 2014.
• It was assigned to the Cancer, Parenting, and Rebecca categories.
• There have been fifty-seven replies.