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What If

One of the hardest things for me is that too much of the time, the thought lurks in the back of my head: “What if she dies?”

I think any parent has that thought at specific moments, no matter how hard you try to suppress or transcend it.  The first time your child climbs up higher than their own height, when they get enthusiastic about sports, when they take their first solo plane flight, when they start learning to drive…you can intellectually know the odds, know that the chances of them being killed in the act of crossing the street or backpacking across Europe are infinitesimal, and yet that primal thought surfaces.  Maybe just for an instant, but still, it’s there.

And you let them do it anyway, because the alternative is to forbid them doing anything even slightly dangerous, keeping them at home and at your side at all times until their life becomes indistinguishable from the backstory in a Stephen King novel.  You have to let them live their life and hope that it all works out, that they don’t roll a long string of ones at the craps table of life.  You have to let them live.

But what if she dies?

Rebecca’s odds are better than we had feared, not as good as we’d fervently hoped: a 50% chance of surviving the next five years.  Imagine that your child’s life depended on a coin flip.  That’s where we are.  Even with the best doctors and care and technology in the country or possibly even the world, her chances of making it to her tenth birthday are basically the same as the chances that your football team gets to choose between kicking or receiving.

In order to maximize her chances of surviving, we have a lot of decisions to make.  The first was where to take her for proton bombardment.  That one seemed pretty easy: in fact, we made it in the room where they delivered the diagnosis, without needing words to come to consensus.  CHOP is the best, or one of the best, and we can get her started as soon as possible, denying the leftover malignancies extra time to continue their spread.

The decisions when we get home are a great deal more difficult.  We have three excellent health care options in Cleveland—The Cleveland Clinic, Rainbow Babies & Children’s Hospital, and Akron Children’s Hospital—but all of them are imperfect in different ways.  None of them immediately stands out as the clear best choice.

We’ll tour and interview with each of them as soon as possible, but what it comes down to is that we have to pick the facility that we believe will give Rebecca the best chances, both over the course of chemotherapy and followup examinations as well as if she suddenly requires more brain surgery.  How do we weight those factors?  How can we know what we’ll need two, three, four years from now?  What if we guess wrong?

What if she dies?

Every decision a parent makes—buying a crib, allowing a piece of chewing gum, signing up for sports camp, going to the swimming pool, handing over the car keys—is a gamble with their child’s life.  It’s just that most of those decisions have very, very long odds, some of them close to infinite odds, against losing.  Now Kat and I find ourselves in a situation where the odds are not at all long, where they in fact are horrifyingly short, and we are tasked with keeping them from getting any shorter.

And if you want to know the real, true hell of this new phase of our lives, it’s this: we can ace every decision, increase Rebecca’s odds at every step, give her the best shot of all possible shots at living to be an adult…and still, after all that, the cancer might survive the radiation and the chemotherapy, hiding a few malignant cells in critical brain tissue until we’ve run out of things to kill it with, and then re-emerge to kill her instead.  We could make all the right moves, and she could still die.

Of course, that happens every day, randomly or otherwise.  Parents who make no wrong safety decisions still lose children.  That possibility, however small, is part of parenting, and you go into the job knowing that.  You do what you can to properly balance safety and independence, and past that, all you can do is hope.  Even, or perhaps especially, when the odds shift far enough to throw the whole mechanism of randomness and luck into painfully sharp relief and turn what used to be routine, slightly banal decisions into long and sleepless nights.

In the end, all we can do is hope that the coin flip comes up in Rebecca’s favor.

But what if she dies?

25 Responses»

    • #1
    • Comment
    • Mon 26 Aug 2013
    • 2201
    KevDog wrote in to say...

    I could have accidentally killed my son a few years ago because of something I didn’t notice when he had a bad fall. I feel your pain, my brother, and hope that you’re flipping a biased coin.

    • #2
    • Comment
    • Mon 26 Aug 2013
    • 2215
    Ricardo Zea wrote in to say...

    Eric, IMHO I think you’re missing the point in your assessment. Nevertheless, I feel your fears as well.

    The way I personally see it, it’s not about “What if she dies?”, is: It’s all in God’s hands.

    • #3
    • Comment
    • Mon 26 Aug 2013
    • 2221
    Michael "Spell" Spellacy wrote in to say...

    This really touched a nerve. I have five little ones, so this thought creeps into my head often. Ditto on the two headed coin. I am hopeful all turns out well for her.

    • #4
    • Comment
    • Mon 26 Aug 2013
    • 2223
    Doug Akins wrote in to say...

    I obviously don’t know you, and can’t even begin to understand what you’re going through, but I wanted to share something with you.

    A friend of mine’s son was diagnosed with a brain tumor many years ago. He was I believe 6 or 7 at the time. I don’t know if his diagnosis was exactly the same as your daughters, but I know he had brain surgery. That was over 10 years ago and his son is alive today and doing well.

    There is hope! May God bless you.

    • #5
    • Comment
    • Mon 26 Aug 2013
    • 2238
    Ron wrote in to say...

    It might be helpful to explicitly go through the mental process of preparing for both sides of the coin. The silver lining here is that the odds aren’t stacked against Rebecca. She could just as likely live 80 years and have dozens of grandchildren.

    Definitely prepare for the worst, but at least allow yourselves to prepare for the best case, too. Life has a way of surprising us all.

    • #6
    • Comment
    • Tue 27 Aug 2013
    • 0012
    pixelsrzen wrote in to say...

    Do your best to take things one thing at a time. The “what ifs” will take care of themselves. Focus on the decisions at hand, the time you can share with your daughter now. Make this difficult time as trouble free and emotionally stable for her as you can. Thank you for continuing to update. You’ll find it helps to get things off your chest, and pre-empts many of the questions from well-wishers that can sometimes be a bit overwhelming. Best wishes to you and yours, always.

    • #7
    • Comment
    • Tue 27 Aug 2013
    • 0138
    Robin2go wrote in to say...

    In all my life, in all the countries I’ve been in, of all the people I’ve met and all the things I’ve done, the highs have never soared as high, nor the lows bottomed out so low, as they do in parenting. We despair and we rejoice for our children. We feel their fears a thousand times more for them, and question ourselves as to whether the decisions of the day were the best ones we could have made.

    You ask the one question that, as parents, we all inevitably ask, barely whispering the words aloud because we don’t want to do anything to upset the balance. “But what if s/he dies?” My son asked me that very question tonight. He has a heart arrhythmia, and it is causing him restless nights. He’s back at school. He’s lonely and missing his family. We know about the arrhythmia, but when it happens, it scares him, and the anxiety fuels the episode. He called me tonight, helpless to do anything about it, and helpless to calm himself down. As his mother, I spent almost an hour comforting my son, calming him down, soothing his fears. In fact, I made him name the thing aloud that he was most scared of: “What if I go to sleep and my heart stops and I die?” At least then we could address it, turn it around input hands, and finally find a resolution of sorts to our fear.

    If only all the monsters under our bed could be named and thus vanquished.

    My heart breaks for you that you and Kat must live with the sword of Damocles above you, overshadowing every decision you make for Rebecca. As parents, we signed on for that, the “for better and worse”. But our children still want the simple things. They want to be reassured they are loved and important. Whether for five years, ten years, 21 years, or however long they are with us, it is the quality of that time, and the love we give them, which makes the measure of a life. Both theirs and ours.

    You will do right by Rebecca. And she will feel loved all her years. Because it’s what we do.

    • #8
    • Comment
    • Tue 27 Aug 2013
    • 0513
    Prisca wrote in to say...

    Eric,

    thank you for your updates, and though there is nothing anyone can say or do to change this horrible time, please know that Rebecca and all your family are in my thoughts. Wishing Carolyn and Joshua strength to cope with what is happening to their sister, as much as you and Kat the power to get your family through these hard times.

    Sending you & you family all my love x

    • #9
    • Comment
    • Tue 27 Aug 2013
    • 0651
    Nick wrote in to say...

    If anything read Robin2go’s comment. Beautifully said.

    Be strong! And make Rebecca laugh as much as possible!

    • #10
    • Comment
    • Tue 27 Aug 2013
    • 0742
    Pam Hlavin wrote in to say...

    Eric,

    I have friends who have 2 children with cancer, one with brain cancer. Luckily both have very good odds and both have been treated at Rainbow. While much of their cancer journey is chronicled in a private journal, the mom has a blog located at http://annramer.blogspot.com/ . Let me know if you want me to introduce you to them.

    I’m so sorry you’re going through this.

    • #11
    • Comment
    • Tue 27 Aug 2013
    • 0743
    Jane wrote in to say...

    I think part of the stress of decision-making is alleviated in the way you wrote your own question. Because the odds are already not the best, and even if you make all the “right” decisions you can’t control the outcome…that means you can stress less about making all the “right” decisions. Yes, every decision is going to have a drawback, but you’ve already determined there’s no one perfect hospital for follow up treatment.

    So please be gentle on yourself. You’re doing your very best for Rebecca. Please don’t second-guess your decisions, and please take comfort in the fact that if no one can guarantee a perfect outcome, then it may well be that one hospital’s imperfection might actually be a good thing that weighs the coin toss in Rebecca’s favor.

    I did lose a baby after birth, and in the next pregnancy, I remember the helpless feeling of realizing there was nothing I could do — nothing — to ensure this new baby would survive. That all the most important factors (the genetics, the cellular division, the place the placenta implants) were out of my control. I could refrain from drinking caffeine and alcohol, but there was nothing heroic I could do on behalf of my baby.

    But sometimes, just being a parent and loving your child to the fullest extent of the moment, every day, continuing to love without reservation even though you might lose, is the most amazing heroism you can muster.

    I’ve been praying for you and your family, and I hope you find consolation as you move through the difficult days ahead.

    • #12
    • Comment
    • Tue 27 Aug 2013
    • 0754
    anne wrote in to say...

    I have two very close friends who walked the road you’re on with their son Josh. He was 7 when diagnosed and a few weeks from 10 when he passed away. Everyone – his parents, the doctors at CHOP, friends, family, did everything they could and made every smart decision, but the cancer came back.

    A few months after diagnosis, Josh’s mom said to me, “We had a long talk with one of his oncologists and he said ‘we’re going to make the best decisions we can with the information we have, and we’re not going to look back and say if we only knew… Because we’ll all go crazy if we do that.’”

    My husband was diagnosed with cystic fibrosis at CHOP in 1976. At the time CF killed half of everyone who had it by age 20. Since then, median age of death keeps moving. Now it’s 38. He’s 37 this year. We’ve been together 20 years. We’ve been a step away from that median for many many years. It’s scary as hell.

    Steven Jay Gould’s essay “The median isn’t the message” may help you cope. It helped me. http://www.cancerguide.org/median_not_msg.html

    Also, find a support network if you’re ready for it. It helps a lot. I can help suggest some via my friend if you want.

    Hope, strength, and hugs to you and yours.

    • #13
    • Comment
    • Tue 27 Aug 2013
    • 0801
    Gini wrote in to say...

    I don’t have an answer. But we will be here with you, no matter what happens.

    • #14
    • Comment
    • Tue 27 Aug 2013
    • 0920
    sventechie wrote in to say...

    Eric,
    As a new parent I can only begin to imagine what you’re going through, but you’ve expressed your situation very eloquently and so many of us are touched by your heartfelt words. Your family is in my prayers and thoughts. Your writing about web development has been a great help to me and so many others. All the best!

    • #15
    • Comment
    • Tue 27 Aug 2013
    • 1122
    Sean wrote in to say...

    Just catching up on your blog after a brief absence from the net for the birth of our second child — so this hits particularly close to home even though I cannot imagine what your family is experiencing. My family is keeping yours in our thoughts and prayers.

    • #16
    • Comment
    • Tue 27 Aug 2013
    • 1335
    Chris Samoiloff wrote in to say...

    Eric, I have no words except to tell you I am praying. God bless you all as you journey through this as a family.

    • #17
    • Comment
    • Tue 27 Aug 2013
    • 1915
    Grace wrote in to say...

    Sending Rebecca, Kat, yourself and the rest of your family my love. It’s all I can give.

    • #18
    • Comment
    • Wed 28 Aug 2013
    • 0039
    Jon wrote in to say...

    I’m so sorry to hear about what your daughter is going through, I can’t even imagine how terrible it must be, I couldn’t even stand it when I have to take my 2yr old to hospital to get his lip glued or when my daughter had a near fatal Croup attack. To face this situation every day is awful but I hope that the treatment works. Oh and Ricardo Zea’s comment is incredibly disrespectful.

    • #19
    • Comment
    • Wed 28 Aug 2013
    • 0254
    SanjayVa wrote in to say...

    All the best for the procedures ahead. We will include Rebecca and your family in our prayers.

    • #20
    • Comment
    • Wed 28 Aug 2013
    • 2103
    Krissy Gallagher wrote in to say...

    God, I have lived every one of your posts. Almost down to the word. It is a bit much to bear at times, while I read, but what I’m able to bear and not able to bear seem beside the point right now. I want to respond to each tiny sentence and paragraph with a “Yes, yes I know! I hear you!” but it would almost become a joke among your other readers (“Oh, let’s see what that Krissy woman has to say about this one!”).

    But let it be known that Mark and I promised each other, with every gut-wrenching decision we made, that we wouldn’t ever second guess ourselves. We would simply know that we’d made the best decision with the best information and the best intentions at any given moment. Of course, this is easier said than done (as we discovered when we thought Austin’s cancer had returned for the third time in May 2012, which we could have avoided had we removed his last half-kidney back in 2010). But even then, even when we thought he was at last going to die, we told ourselves over and over that we had done what we truly believed was best and we were comforted by the fact that he had had two truly fabulous, healthy, normal, cancer-free years. Of course, this is okay for me to say now because we were wrong in that fear — his cancer had not indeed returned and we HAD indeed made the right decision. But still, just know and trust that you and Kat are doing everything in your power to protect Becca as perfectly as possible in a totally imperfect situation.

    • #21
    • Comment
    • Thu 29 Aug 2013
    • 1519
    Gina wrote in to say...

    Eric,
    As easy as it is to fall into thinking about “what if she dies,” what is far more important is “what if she lives?” What can you do to help her live as wonderful and full and awesome of a life as she can, for however long it is? That’s what really matters. Death sucks, but we all die someday. What matters is what we do before then.

    • #22
    • Comment
    • Fri 30 Aug 2013
    • 0908
    Nick Jubrey wrote in to say...

    I don’t think there is anything we can say to ease your pain but try to enjoy every moment with your family.

    • #23
    • Comment
    • Fri 30 Aug 2013
    • 1249
    Jodie wrote in to say...

    This is beautifully written. It really is a constant worry in the back of the head of every parent. Constantly weighing those risks and reading statistics to make the best choice at every turn. I really hope this coin is biased toward Rebecca and she gets many many happy years full of love. If not, though, I know she will never question how much she is loved and how much she has touched the lives of so many others.

    I’ll be reading your posts and keeping up to date, but if you need anything don’t hesitate to ask.

    • #24
    • Pingback
    • Fri 6 Sep 2013
    • 1147
    Received from How You Can Help My Mood, Part 2. | Ferrett Steinmetz

    […] That’s not a way to start a happy post, but it happens to be the truth: Rebecca is five, and she’s about to go in for dangerous proton therapy and a cocktail of chemo.  No child should be forced to go through this.  No family should.  And I posted an article yesterday on how misleading the survival rates are for children’s cancer (hint: lower than grownup cancer), and though Rebecca’s chances are better than many others, they’re still not good. […]

    • #25
    • Pingback
    • Fri 6 Sep 2013
    • 1954
    Received from Feature: Rebecca has brain cancer. | Rook's Lookout

    […] That’s not a way to start a happy post, but it happens to be the truth: Rebecca is five, and she’s about to go in for dangerous proton therapy and a cocktail of chemo.  No child should be forced to go through this.  No family should.  And I posted an article yesterday on how misleading the survival rates are for children’s cancer (hint: lower than grownup cancer), and though Rebecca’s chances are better than many others, they’re still not good. […]

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