theferrett: (Meazel)
[personal profile] theferrett

There is a little girl.  If she is lucky, she will hit six before the brain tumor in her head kills her.

It won’t just kill her, though.  “Her” is an abstract, a body hitting the floor.  Her is Rebecca, and Rebecca is my glorious little thug.  Rebecca the stubborn, who at one time when asked to say “Thank you” to get her favorite dessert from Aunt Gini, steadfastly refused to say anything despite half an hour of coaxing.  She didn’t get the dessert, but she gained a curious kind of respect from us all – maybe we didn’t understand why she refused, but the kid had made a decision and stood her ground, never throwing a tantrum, simply refusing to give in to this adult peer pressure.

Rebecca is my glorious companion in untruths.  I take it as a point of pride to lie, and lie flagrantly, to small children, just to introduce them to the idea that not all grown-ups tell the truth.  So I tell increasingly large and crazy whoppers until it all falls apart and they stare at me in half-horror, half-bemusement, saying, “Uncle Ferrett!  America was not founded by sentient otters!” and I say, “Show me where it says otherwise.”

Rebecca, however?  First time I tried that trick with her, she just gave me the stinkeye.  “Yeah, right,” she said, a liar able to spot one… but kept returning, asking me questions about things to hear my crazy lies with great interest.

Rebecca shows me her love not with words, but with little pokes and teases.  The Meyers are a very kind and loving and fair family.  They do not trade in insult.  But Rebecca longs to, and she knows I’ll give as good as I get, so she will come up to me and tell me, “Those are silly nails,” and then I will say, “No, they are glorious.  You are the one with ugly nails.”  And then she will say “They are purple!” and shove them in my face as if “purple” was the most wonderful thing in the world, and then I will say that mine aren’t chipped at the edges, and then she will be dead within the month.

That is not a lie.

Dead within a month, probably.  Hard to tell with cancer patients: anyone who gives you a firm deadline is trying to make it easy for you.  But the brain tumor nestled inside her skull has grown to twice its size, and she has already run low on energy – a little crazy fireball flinging herself around the lawn simply watches TV now, too tired to move – and oh, how her fingers tremble when she eats her string cheese.

She’s grown a couple of inches.  The rest of her body doesn’t know she is about to die, so it’s proceeding like everything is normal.  They had to buy her new clothes, if I recall.

Dead.

SHE

IS

FIVE

YEARS

OLD

She will probably cruise across the six mark next week, on her birthday on the 7th, but how much longer she’ll get?  Unsure.  Every chemotherapy we threw at her, every experimental treatment, has failed.  At this point, the only thing we can do is maybe cut into her brain and try to remove part of a tumor that refuses to stop swelling, a tumor entangled with all of her thought centers, and it is almost certain that this would terrible things to Rebecca’s remaining days.

And when we got that diagnosis, the one where the doctors gently all but said, “It’s over, go home and love her for the rest of her life,” the silence was a shriek.  It was a two-hour drive back from Pittsburgh – we left a little later because all the doctors came to hug Rebecca, who they loved, but realized they would never see again once we took her back to Cleveland – and that trip was deep-sea grieving, silent, pressurized; if we had let ourselves weaken in any way, we would have been crushed under an ocean of salt tears.

We cried in little luxuries, clenching our fists, scrubbing the tears from our cheeks like they were alien invaders, and Rebecca slept in the back because Rebecca, vibrant and feisty Rebecca, was tired.  So tired.  And not just brain-tired, though I’m sure the swelling intracranial pressure had a hand in it, but to shove a five-year-old in front of her mortality is a terrible thing.

You know what happens when a kid dies?  She worries about her parents.  She’s told Eric that she is terrified that her death will hurt Mommy and Daddy forever… and it will.  She’s cried because her younger brother, who is sunny and three and her best friend and mostly-unable to fathom what’s going on, will not remember her.  She was upset this morning, bitter at her sister and brother because they get to stay and she doesn’t.

All of those thoughts will vanish.  Deleted.  Like a virus-eaten file, everything that Rebecca is and could have been was gone, and fuck the heavens there are not words enough.

And minutes after the diagnosis, after Gini and I had offered to leave the room so Eric and Kat could tell Rebecca that the medicine hadn’t worked and she was going to die – imagine having that talk with a kid in a stroller – I was very good.  I did not punch walls.  I did not throw chairs through windows.  Mostly because it wasn’t the hospital’s fault.  They had done everything they could, assisted by Kat’s able medical knowledge (Kat is a doctor, and the conversations she had with doctors in my presence spiralled rapidly out of my casual comprehension).

But I thought of taking a bullet to my head.

I had never really understood the concept of dying for another human being.  I mean, I knew people did it, but I never knew anyone in serious enough trouble that it was an option.  My grandmother and grandfather were senile, yes, but they’d lived good long lives; my Uncle Tommy, my sainted Uncle Tommy, had survived hemophilia, HIV, and hepatitis, so I always thought he was invincible until pancreatic cancer took him.

But Rebecca.  I would clasp the barrel to my head, if the person pulling the trigger could guarantee her life.  I imagined saying apologies to Gini as I did so, but Gini?

Gini would have also been there for the bullet.

And Eric and Kat might well have been shoving me out of line.

I knew of at least four people who would give their lives for this child, this darling truculent stubborn-ass snarky girl with the wild hair, and there was no one to take the offer.  We stood in the great hallways of the place with the most power in the world to do this, all the might of American medical research aimed straight at this child’s brain, all our technologies marshalled to save her, and the time was short and this tumor wants to kill her inasmuch as it mindlessly “wants” anything, and…

…I slumped next to a Batman playhouse meant for other children.  I didn’t know how many dead children played with that Batman playhouse, but I knew the number?  Was nonzero.

This was where society did everything they could, and society failed.

There is no force on Earth that can save Rebecca.  That is a cold thought.  That is a thought that drains the water from you.  Whenever we hear, “There’s no force on earth that could,” we’re trained by movies to think the superhero will be coming, the brilliant scientist will be coming, the miracle will be coming, but no.

We have scoured everything on Earth, and the Earth is insufficient.

And so everything we love about Rebecca will fade to photos.  And we will go on cancer walks, walking with the photo-ghosts of other children, raising our dead high to marshal funds in the hopes that maybe future children can be saved.

Yet the only way we can save future children is to rearrange, discover, and build things that have not yet been built.  It’s some comfort to think that we’ve raised tens of thousands of dollars to help future children, and maybe some of that money will pay the salary of a smart woman who cracks the code on the anaplastic astrocytoma, and then there will be no Rebecca.

Yet there is nothing now – no love, no science, no willing God – that can save her.  We join the ranks of millions of other humans who have watched helpessly as disease ravaged their child.  It’s an old war, perhaps the oldest, and in one sense Rebecca is just another casualty.

But she is ours.

And there will be love.  We will care for her.  We will bring her ice-pops, and carry her when she is too tired to walk, and brush her hair, a huge pyramidal stack of love – the Meyers support Rebecca, we support the Meyers, and last night I had at least twenty people who didn’t know the Meyers supporting me.  This is the beauty of mankind, and don’t you dare tell me that humanity is not kind; yes, we have moments of savagery, but I watched the faces of the doctors in the children’s oncology ward yesterday, the cost of it engraved in their faces, and yet they showed up time and time again to battle diseases that they often lost, just in the hopes that one of them won.

I grabbed the man who told us that Rebecca would die, and thanked him for doing it.  Not for the message.  But because someone had to tell us, and I knew what toll that must take on him, relentlessly informing parents that there was no force on Earth.

And yes.  Love is wonderful.  Love will make this better.  Love will ensure that we get through this, as when it is all done we will cling to each other like survivors on a wrecked boat, reaching hand to hand, seeking warmth, trying to repair whatever wreckage is nearby into survival skills.  We may, in time, rebuild.

But all the love in the world cannot save Rebecca.  All the medicine cannot.

My darling goddaughter, my special little girl, will pass, and you’ll forgive me for being a little bitter about that.

(EDIT: If you want to help, then feel free to donate to the CureSearch for Children’s Cancer.  I’ve given them $500 of my own money, at a minimum; we may not save Rebecca, but that’s no excuse to leave other potential children behind.)

Cross-posted from Ferrett's Real Blog.

Date: 2014-06-05 09:04 am (UTC)
dangerouscurves: DC Gold (Default)
From: [personal profile] dangerouscurves
No words I have will be sufficient. I could not read this and not reach out. A living piece of sunlight will pass on with her death, and my heart breaks for you, Gini, and her parents.

Date: 2014-06-06 07:42 pm (UTC)
franklanguage: Man-in-the-moon belt buckle (moonbuckle)
From: [personal profile] franklanguage
Humanity is able to be kind, but unfortunately has at least as much capacity to be brutal.

Death, however, is always brutal; it's the world's loss that Rebecca is leaving this plane of existence.

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