meyerweb.com

Skip to: site navigation/presentation
Skip to: Thoughts From Eric

Archive: 'Rebecca' Category

All the Way to the End, All of Us Together

Our first day here at Disney World, we tried to go on Big Thunder Mountain Railroad, but it was closed “for refurbishment”, so we decided to try Splash Mountain instead.  In addition to being a ride that was right there where we were, it promised to cool us off a bit.  Going from 30ºF to 90ºF in the space of a day was a bit rough on everyone.

Carolyn and Uncle Jim sat in the front seat of the log boat, and Rebecca sat between me and Kat in the next seat back.  Things started well enough as we splooshed and bobbed around bends, but fairly near the beginning of the ride, you get a glimpse of its (sort-of) end: a fifty-foot drop down to a splash pool.  Rebecca, seeing a log full of people fly past us down the ramp, the screams of its riders trailing in its wake, wasn’t at all happy.  She switched instantly from being amused at the water occasionally splashing her parents to scared of what was going to happen.

The various animatronic displays along the way helped distract her, but she kept returning back to her fear of the big hill.  Kat and I soothed her as best we could, telling her it would be all right.  She generally accepted this, calming down until the next time she remembered the big hill that lay ahead.  She never cried, exactly, but the fear was still there, an almost physical thing at times.

“I don’t wanna go down the big hill!”

“Honey, it’s all right.  It’s going to be okay.  We’re right here.  Mommy and I will keep you safe.”

“No, I don’t wanna, it’s too scary.”

“I know, sweetie.  I know you don’t.  But there’s no need to be afraid.  It’s coming and it will happen and then it will be over.  Try to enjoy all the little shows before.”

“Daddy, please let me get off the ride.”

“I can’t, honey.  If there was a way to get off, we’d take it, but there isn’t.  The ride goes where it goes, and we’ll go with it, together.”

“I wanna get off this ride!”

“I wish we could get off, Rebecca, but we’re on the ride now and we have to take it all the way to the end.  I know you’re scared, but we’re right here with you.  We’ll keep you safe, sweetie.  You don’t have to be afraid.”

We’d arrived at the bottom of the last climb, the one that would take us to the big drop.  She looked up the ascending tunnel into the bright, bright light streaming down, and shrank back, quivering, her eyes wide with fear.  She knew the moment was close.  I leaned in next to her, keeping my voice level and light.

“I know, Rebecca.  I know.  I know you’re scared, but it’s going to be all right.  It’s going to be all right.  It’ll be all done very soon.  Mommy’s here, and I’m here, and we’re with you until it’s over.  We’ll stay with you all the way to the end, all of us together.  We’ll be right here with you.  Always.”

The log was drawn up the hill, the drop coming closer and closer, relentlessly.  My arm around her shoulders, Kat’s arm around her shoulders, both of us hunched toward her tiny, trembling body pressed against our sides; and as we came to the precipice, she shut her eyes and squeezed our hands tight.

On Writing

Our situation, and my posts, have been the cause of sleepless nights and fallen tears for a great many people.  In some ways I feel bad about that; it occasionally feels like I’m forcing our pain onto other people, which isn’t exactly a friendly thing to do.  But I know you’re here because you want to be here for us, and here, words are how we commune.

But why, I am occasionally asked and occasionally ask myself, am I writing about Rebecca’s cancer instead of doing other things?  There are a number of reasons.

Part of it is that I’m creating a precisely timestamped chronicle for later, the historian in me asserting itself.  This is where a lot of my tweets come from, as well: the desire to record something at the moment, so that later I’ll be able to say whether X happened before or after Y or how many days apart two events actually were.

But it’s also for Joshua, if he wants to know more about his sister and what happened to her, when he’s older; and for Carolyn, if she ever wants to revisit this time or see it from my perspective, to compare against her memories.  And perhaps for others, if I ever decide to collect these fragments into some sort of longer work.

More importantly, writing about what’s happening and how I feel about it allows me to organize my thoughts and give some structure to what’s happening.  In a situation where so much is beyond our ability to do anything at all, this is something I can shape directly.  It allows me to feel some small measure of influence.  It lets me face my fears by naming them.  It helps me get a handle on a few shards of this overwhelming thing that defies any real understanding.

And of course I’m grieving online.  I do that here so that I can put it away elsewhere, so to speak.  When I’m with the kids, I can be there for them as the father I’ve always been and hope to keep being, rather than the hollowed-out ruin I sometimes feel like.  Grieving here, through the words that come to me, makes that easier to do.  So I write and tweet.  A little bit of pressure release.

But most of all, I am sharing Rebecca with you, with anyone who will listen.  We’ve always felt it’s up to our kids to become themselves and then bring themselves to the world in their own way, to meaningfully affect it and be affected by it.  In the words of Khalil Gibran:

Your children are not your children.
They are the sons and daughters of Life’s longing for itself.
They come through you but not from you,
And though they are with you yet they belong not to you.

You may give them your love but not your thoughts,
For they have their own thoughts.
You may house their bodies but not their souls,
For their souls dwell in the house of tomorrow,
which you cannot visit, not even in your dreams.
You may strive to be like them,
but seek not to make them like you.
For life goes not backward nor tarries with yesterday.

You are the bows from which your children
as living arrows are sent forth.
The archer sees the mark upon the path of the infinite,
and He bends you with His might
that His arrows may go swift and far.
Let your bending in the archer’s hand be for gladness;
For even as He loves the arrow that flies,
so He loves also the bow that is stable.

We’ve always meant for our children to fly free of their own accord, on the arc of their choosing, when they were ready.  Rebecca will almost certainly not have that opportunity.

So now we are her archers.  In the Web, I have a bow that can send her arrow all the way around the world.  If her flight is to be short, then let it be far, a trail of purest fire etched across every sky, more beautiful and wondrous than any comet could ever hope to be.

The Evening

We had guests for dinner, as we often do, a house full of squealing, laughing children and their grownups, preparing dinner and trying to figure out who would get stuck with setting the table.  We’d all gone up the street to the elementary school to test out their new playground equipment and try to fly a kite in the random spring breeze, running around an open field and trying not to slip in the mud.  Now we were back and ready to eat.

Rebecca played and laughed with the other kids, all obvious traces of our conversation earlier that day erased by the simple joy being a five-year-old, living wholly in the moment.  Playing impromptu tag, hiding around corners to shout “Boo!” and cackle with delight, singing pop songs and musical numbers with her sister and friends.  Because for all that’s going on, you would never know to look at her that anything was wrong.  We can even forget, from time to time.  She lives just as she always has, full of energy and smiles, and we’re determined to keep it that way as long as we can.

Eventually, it was time to take the little ones up to bed, which Kat and I divided up with a family friend.  Suddenly, I heard Kat’s voice breaking.  She was in the nursing chair we still have hanging around the house, Joshua on her lap, ready to read his bedtime stories.  Rebecca was standing next to her, still and calm.  I sat on the footstool, my legs just behind Rebecca’s.

“Rebecca told me she’s scared that she’s going to die and be all alone.  Baby, we will be always be with you, always always always.  You will never be alone.  Okay?”

My hand was on Rebecca’s back, tears in my eyes but not on my cheek.  I asked if she understood what Mommy had said.  She nodded, her eyes cast down in thought.  We thanked her for telling us what she was feeling, for trusting us.  She nodded again, and turned to look at me.  Looked into my eyes, and saw everything that was there.  Gave me a sad, affectionate smile, put her arms tenderly around me, and kissed me gently on the cheek.

My little girl, my child, trying to soothe my pain.


Later, as she lay under her princess blankets to read her own bedtime stories with a family friend, I came in to tell her good night.  She was holding a book about kids who have cancer.  We have such books, now.  I perched on the edge of the bed next to her and smoothed back a riot of her curls.

“Can you tell Daddy why you picked this book to read?” our friend prompted.

“Daddy, I’m reading this book because it will help me be strong—”, she curled her arms in classic strongman pose, then dropped them, “—and brrrave.”  She beamed up at me.

I smoothed back another curl, affectionately tweaked the end of her nose, and looked directly into her eyes as I said, “Sweetie, you are already by far the strongest and bravest person I have ever met.”

A wide grin, a little chortle, and then she flung her arms wide.  I leaned down and she leaned up, our arms circling each other, squeezing just hard enough.  I held her lean, solid weight close, her body strong and light, and for those moments I felt no sorrow, no fear, no pain, not for her and not for me, not for any of us.  There was just a calm peace rooted in the strength of her love and the bravery of her heart, and nothing else.

The Truth

We asked Rebecca to sit with us on the half-couch situated against the short wall of the child psychologist’s small office.  She clambered up into Kat’s lap, facing toward me, looking at me sidelong with her unique mixture of shyness and impishness.  I was already having trouble drawing my breath, arrested by her affection for and trust in us, and pierced by the knowledge of what we were about to do to her.

“Honey, we want to talk to you about something.”

Her eyes dropped, her face melting to something wary and withdrawn.  She knows, I thought.  She knows, and we have to say it anyway.

“Remember the bad rock?”  No expression on her now as she began to curl up, slowly, so slowly.  “The tumor in your head that the doctors can’t take out?  And you know how Mommy and Daddy have been looking for special medicine to make the bad rock go away?”

We waited for a nod, some signal that she understood.  After a moment, her eyes darted to the side as if looking for escape routes.

“We haven’t been able to find special medicine, sweetie.  We’re still looking, but we might not be able to find any.”  Tears were streaming down Kat’s face.  Down my face.  I could barely see Rebecca’s face, she had lowered her head so far as she hunched forward, away from Kat, into the space between her parents.

In a small, choked voice: “Do you understand, honey?”

A pause.

Her head nodded fractionally, spasmodically.  And then her jaw started to quiver.  Silent.  Quivering more and more and her face twisting in anguish and then she started to wail.  She collapsed backward into her mother’s embrace, still curled into a ball, crying desolately, hopelessly.  Keening.

All three of us, sobbing and clinging to each other.

She had known ever since the tumors returned.  She had expressed her fear in a few whispers, soothed by our reassurances that we were still looking for special medicine, and now she knew we were telling her she was going to die.  She knew, and was terrified, curving her small body into a ball surrounding her pain as we tried to make a shield of our arms, futilely trying to protect her when the killer and the pain were already inside the shield.  Inside her, where nobody could get it out.  So our arms and bodies instead became a blanket inside which she could mourn her own life and try to cope with her terror of going away forever.

We wept what seemed like an endless ocean of suffering, but after a time, it started to ebb.  We could speak again, barely, and thought she could hear us when we did.  We had to ask her, even though we knew.  Even though I would given much to never say or even hear what was coming next.

“Are you scared, Rebecca?”

A nod through tears, her jaw quivering again.

“Can you tell us what you’re scared of?”

She wept again, unable or unwilling to say the words.  Kat and I choking on our pain and her pain as Rebecca sobbed with renewed terror, clinging to Kat and squeezing my hand in hers.

We asked her again, as gently as we could through our anguish.  And again, later, when we had all recovered enough.  And again.

Finally: “Baby, can you whisper it to one of us?”

She nodded, miserably.

“Who do you want to whisper it to?”

She pointed at Kat.  Shifted her head up and around.  Whispered, her voice so tiny and full of pain and fear and breaking into another wail:  “Of dying.”

I will never know how long we wept with her.  What we said to try to soothe her pain even a tiny bit.  How we tried to comfort and protect her.  I will always remember how utterly helpless and wounded and shattered I felt, the sick ache in the center of my chest.

Eventually the tears came to an end, as all things must.  She hadn’t moved from her place, curled up against Kat, still holding one of my hands.  Her face was clouded and stormy with the echoes of her tears, but there was some measure of calm.  It let Kat and me come to the same place, quiet and still in the shadow of all our grief.  We asked if she had any questions; she shook her head.  We told her we loved her.  She whispered, almost but not quite crying again, “I love you too.”  We kissed her, almost but not quite crying again.

And then it was time to tell her sister.

Flare Sites

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.

White Blotches

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.


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.


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.

Care and Strength

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.

The Choice

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.

April 2014
SMTWTFS
March  
 12345
6789101112
13141516171819
20212223242526
27282930  

Archives

Feeds

Extras