Posts in the Rebecca Category

Westward Bound

Published 10 years, 5 months past

If you can read this, we’re on our way home to Cleveland.  Somewhere on the Pennsylvania Turnpike, at a rest stop or from a passenger seat, I’ve tapped the Publish button in the WordPress iOS app, sending this post forth to tell the word that the second phase of Rebecca’s treatment has come to an end, and we are finally, after so many weeks, on our way home.

Technology has lifted us in so many ways, big and small.  The ability to fly Rebecca to CHOP when she was unconscious and at risk of her life.  The equipment used to remove the tumor that threatened her, the machines that monitored her brain activity, the shunt that keeps her intracranial pressure low, the arterial port in her chest wall, the massive equipment that fired protons into her skull on precisely calculated vectors into a precisely mapped volume at the center of her brain.  The wireless interfaces to the global networks that let us keep in touch with friends and family, watch a movie on demand, research treatment options, buy supplies to be delivered to our temporary residence in Philadelphia, videoconference with our children and parents back in Cleveland.  The ability to draft this post ahead of time and then simply publish it with the touch of a button.

People have lifted us in so many ways, big and bigger.  The relatives and friends who rushed to our side without a second thought, who did what we asked when we asked without hesitation, who came to see us throughout the whole extended process, who organized to feed and support the family we left in Cleveland, and who came in force to walk for Rebecca and for cancer research.  The Philadelphia friends who came to see us for a few hours here and there, who gave us brief breaks away, who checked up on us to see how we were doing.  The wonderful people at the University City Arts League, where Rebecca was able to take painting and dance and hula-hoop classes in the afternoons.  The fantastic staff at Morey’s Piers, who made sure that the one weekend we could have in Wildwood with the whole family was the best it could possibly be.  The incredible staff and even more incredible volunteers who run the Philadelphia Ronald McDonald House, who housed us and fed us and gave us a calm and welcoming space where Rebecca could play with other kids.

The web community lifted us in ways so varied and vast that they very nearly defy belief.  When I put out the first call, you were there, instantly and in force, hundreds of you, replying and favoriting and retweeting and liking and commenting and emailing to show your support, your regard, your care.  So many well wishes came our way, and every one of them helped us.  They’ve continued to help us throughout the process, as people have checked back in or just let us know that they’re still thinking of us.  Because whatever you may think about the efficacy of prayer and warm thoughts and good vibrations and karmic loans with regard to medical issues, there is no doubt that the expression of those things help in this way:  they let those who are struggling to deal with terrible choices know that they have a support network and resources to draw on, should they be needed.  That is a bigger deal than you can imagine, unless you’ve been there yourself.

All those things got us through the first phase, the initial surgeries and recovery; and then through the second phase, the radiation treatment and initial chemotherapy.  We’re headed back to a month-long resting period, a brief window of no treatments… and then the third phase will begin: a year (or more) of intensive chemotherapy that will likely have serious side effects, but offers the best chance of eradicating whatever cancer cells may have survived the resection and radiation.  This will be a deeply trying year, but we will face it in our home, with the whole family together.

So we’re wending our way through the Appalachian Mountains, looming dark against the twilit sky, leaving behind the city that sheltered us while we fought for our daughter’s life.  Ahead of us lies the city that is our home, where we will fight to secure her future.  It makes our path forward immeasurably easier to know that so many of you are there to help us.  We can never thank you enough.

Hoping for Uncertainty

Published 10 years, 5 months past

With a lot of cancers, including the cancer that Rebecca has, the best you can hope for is an ongoing state of uncertainty.

At the moment, we’re in our month-long break.  The purpose behind this rest is to let her brain settle down from six and a half weeks of radiation treatments.  That’s enough time to let any swelling subside.  At the end of that break, just before Thanksgiving, she gets her first post-proton MRI, in order to establish a baseline.

The very best result we can hope for is to not know if there’s still cancer in there or not.  If her MRI looks clear, if all the structures look like they should and the brain tissue looks relatively undamaged and there’s nothing new and deadly, then all we know is that there is no evidence of cancerous growth — but absence of evidence is not evidence of absence.  Wondrous as it is, medical science has not yet developed imaging with enough detail and discrimination to pick out cancerous cells hiding among healthy cells.

The other result, the certain result, is that we find out, from seeing a tumor or other significantly abnormal result, that the cancer is still there and very aggressively attacking our daughter.  In that case, we’ll most likely be put in touch with hospice services.

Assuming that the baseline MRI and the ongoing blood tests show nothing obvious to worry about, we will proceed with an aggressive chemotherapy regimen.  As we do, every couple of months, a new MRI will be taken.  As with the baseline, the point of these MRIs is to make sure no tumors are growing in spite of the chemotherapy.  If not, we continue with the treatments, hoping to kill whatever microscopic bits of cancer might still be there, hidden between the neurons of her brain and the pixels of the images.

All the time wondering if all the cancer has already been killed, and we’re just pouring more chemotherapy agents into her to no purpose, like firing artillery barrages into a city long since abandoned by enemy forces.  All the time knowing that we can’t take the chance of stopping too soon, just in case there’s even a single cancerous cell left.

After a year of chemotherapy — assuming we make it that far — then we decide whether we should continue further, or call a halt.  I can’t imagine what we’ll be feeling by then, how we will bias ourselves.  Partly because I don’t know yet how the chemotherapy will affect Rebecca, so I don’t know what we’ll be feeling after a year of side effects.  Maybe we’ll be ready to take any chance to end the suffering of side effects.  Maybe we’ll be ready to take any chance to make sure all her suffering was not in vain.  Or maybe there won’t have been much suffering; everyone has a different reaction to the drugs, and some people have very few side effects.  I can’t know until then.  Assuming we make it that far.

After the chemotherapy is finally done, whenever that happens, then Rebecca will still get regular MRIs, all with the same purpose: to make sure nothing malignant is growing.  Every three months for the first couple of years, then maybe every six months for a few years, and then, with any luck at all, every year for the rest of her life.  And always, every time, the best possible result will be this: as of now, nothing has gone wrong.

I have lived with this exact uncertainty my whole remembered life, so this is not as difficult for me as it might have been, but I’ve noticed that this is the facet of our future that seems to horrify people the most.  I think most people have a vague sense that cancer is a disease that can be definitively cured — that it comes, it’s attacked with treatments that can be debilitating, and that eventually, if things go well, you can declare that the patient is cured.  That eventually, you can relax into the knowledge that the terror is over.

It’s never over.  You can never relax.  You can only get used to your new, heightened awareness of the horrible uncertainty, and to the probably new and unwelcome idea that uncertainty is and will remain the state in which you fervently hope to dwell, for however many days are left.

Thanksgiving

Published 10 years, 4 months past

This is an even more thankful holiday for us than usual.  We’ve always been thankful for our good fortune, friends, and family, but it was two days ago that we got the strongest indication yet that our daughter Rebecca will live to see next Thanksgiving, and very possibly many more beyond that.

Tuesday morning we got up very early to deposit Carolyn and Joshua with friends, and then took Rebecca to Hillcrest Hospital for an MRI.  This was our first interaction with the radiology staff there, though by no means the last, and Rebecca as usual charmed the socks off of everyone there.  After she recovered from the anesthetic, we got lunch, picked up a few groceries, and then headed to the main campus of the Cleveland Clinic to get the results of the MRI.

To put it baldly, the results couldn’t have been any better.  The MRI showed no sign of renewed tumor growth, no regions that appear abnormal, not even signs of swelling secondary to cancerous activity.  This doesn’t mean that she’s cancer-free: nobody can say that with certainty.  As I wrote two weeks ago and XKCD beautifully illustrated a couple of years ago, there can be never really be certainty except of the terminal kind, but what we have now are strong signs that Rebecca’s cancer actually can be eradicated.  What that means is that instead of hospice, we can start a year of chemotherapy in an effort to make certain that the astrocytoma doesn’t return.  The normalness of the MRI, and the particular pattern of side effects she experienced from the first round of chemotherapy, mean it’s reasonable to feel hope.  As a friend put it, this isn’t the light at the end of the tunnel, but it means that there is a tunnel.  A long and difficult tunnel, perhaps, but nevertheless a tunnel that might one day yield to daylight and open skies.

And so we’re thankful for the nurses and doctors that have shepherded us through one of the most harrowing periods of our lives.  Without them, Rebecca would already be dead.  We’re thankful for the medical research and science that made it possible to remove so much of the tumor and target any remaining cancerous tissue.  Without them, Rebecca would be dying.  Instead, she is still as sparklingly alive as ever, and we have hope again.

We‘re thankful that we have the means and the opportunity to fight for our daughter’s life.  We’re thankful for family, who were there, and will always be there, when we need them.  We’re thankful for all the people who have supported us through the past several months, bringing meals to our house, ferrying our kids to school and activities, and doing the organization work to make sure it all happened.  We’re thankful for the Cleveland Animal Protective League, where we adopted a three-month-old shorthair tuxedo kitten yesterday.  We’re thankful to be together under one roof, and not under a cloud of grief.  We’re deeply, profoundly thankful.

A happy Thanksgiving to one and all, whether you celebrate a specific holiday today or not.  May every day be an occasion to be thankful.

The Choice

Published 10 years, 3 months past

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.

Care and Strength

Published 10 years, 3 months past

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.

White Blotches

Published 10 years, 4 weeks past

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.

Flare Sites

Published 10 years, 2 weeks past

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.

The Truth

Published 10 years, 2 weeks past

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.

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