High-Value Real Estate

Published 10 years, 9 months past

Tomorrow begins a long and dangerous road, one we’re lucky to be able to walk at all.

We’re back in Philadelphia to start almost seven weeks of proton radiation therapy, which will attempt to burn away the cancerous cells in Rebecca’s head without burning too much of the brain matter that surrounds them.  That’s the danger: the brain matter in question is the brainstem, thalamus, and fornix.  These are all, in the words of several of the specialists who’ve talked with us, high-value real estate.  Too much damage there could cause serious side effects.  And my use of the word “serious” in that sentence may constitute one of the greatest understatements of my life.

This is why we are undergoing proton therapy as opposed to any other form of radiation therapy: we are told that proton therapy is “more brain-sparing” than its irradiating cousins.  In other words, it’s the technique that gives us the most cancer-burning for the least brain-burning.  Or so we are told.

In all likelihood, “least” does not mean “none”.  Thus the concern about possible side effects; that is to say, neurological damage, which (if it occurs) may or may not be significant, and may or may not be permanent.  There is no way to know until it happens, or possibly doesn’t happen.

These are the dice we are forced to roll.  We must bet our daughter’s cognitive abilities against her continued survival, her mind against her life, and hope against desperate hope that none of the die lands with a skull face-up.

As I say, we’re lucky to have the opportunity to possibly inflict brain damage on our child, because having that opportunity means the cancer is weak enough that there is a decent chance of eliminating it completely.  If the doctors can do that, she can actually grow up and learn to cope with whatever side effects there might be, or maybe even have her growing brain interpret the damage as deficit and route around it.  She will be able to become whoever she will, and if that isn’t who she would have been without the cancer and radiation, well, that’s unescapable now.  Even if there are no physiological side effects at all, she will still never be who she would have been.  This whole experience will profoundly shape her, and the rest of us as well.

All of which is really unremarkable, in its way.  We all extinguish an uncountable number of possible future selves every day of our lives, and never mourn.

As I type this, Rebecca is unwinding from the long drive here with a favorite video.  Part of me wants to go over there, stop the video, and spend all night holding and talking with her.  But she is a spirited, defiant five, and would probably end up throwing a (deserved) tantrum at me for messing with her and boring her to tears and possibly scaring her a little.  Because she is already far too painfully aware of her own mortality, in a way that no child should ever have to experience.  I have no right, and less desire, to force that awareness even further into her life.

We don’t know what lies at the other end of this stretch of the road, but must walk it anyway, because we know beyond doubt what lies at the other end of the other road, the one our hearts want us to take, the one that leads away from proton beams and chemical cocktails and pain and fear and so many unknowns, but also away from the possibility of a full life.

I hope she can one day forgive us our choices.  I hope we can one day do the same.

Comments (17)

  1. Thanks again for your eloquence and honesty. What a difficult road. I wish you continued progress in your heart-wrenching journey.

  2. My heart truly goes out to you and your family. I have faced too many health scares with my own daughter and husband. Children are amazing, with the right treatment, therapy, environment and family they can thrive. You’re already providing her with much of that. Just be sure to question and research. Informed parents are the best advocates for their children. Children also know more then we think, if you want to hug her, tell her you need a hug-she’ll probably be thrilled to give you one, or offer to watch with her and let her sit in your lap. She will come through this, children have miraculous abilities to heal.

  3. I hope these thoughtful and difficult-to-write posts are helping you cope with this pain. I know that some of my most intense bouts of writing have come when I’m overcome with grief and too overwhelmed with the life just to plod along in usual fashion. It’s as if writing things out gives me a way to understand life—or at least to process it.

    Thank you for cutting a hole into your life and letting us peek into your painful journey, even if it’s just your way to maintaining your sanity through it all. See you soon, I hope.

  4. My thoughts continue to be with you, Rebecca, and your entire family. I hope every day for one of these posts to be filled with only good news.

  5. I’m sorry you’re going through this. I hope you’ve had the chance to talk to the docs about and look into some of the cognitive training/rehabilitation tools that are out there. There are individuals out there who have recovered from traumatic brain injury (some even late in life or to a remarkable degree of high-functioning). I hope that information (along with knowing that Rebecca’s age will help her recover better than an adult could) can be a source of hope to you. I haven’t worked in cognitive rehab for some time and I’m sure the staff at the hospital have got you covered, but if I can be of any information or help, don’t hesitate to contact me.

  6. Wow. I hate that you have to go through this. I know what it is to wish you could take your child’s place; we’ve been through the medical wringer with my son. He is fine now for the most part… You just find your own type of “normal”. If he can be happy, I can be happy. There is no easy path but I pray every blessing possible for your family.

  7. HI Eric – our thoughts and prayers are with you and your family during your tough struggle. All our warm wishes, luck and light from Australia, we wish for a speedy recovery for you all. Thank you for your honesty too – its not often someone of your caliber bares all to the community. best.

  8. Keeping you and your family in my thoughts, and wishing hard for the best possible outcome.

  9. Our thoughts and prayers are with Rebecca and your family.

  10. Eric,
    thank you for continuing to share your journey. It is truly heartbreaking to know what tough times your beautiful little girl is facing, and I cannot imagine how your hearts as parents cope.

    Thinking of Rebecca and you all ~ sending you positive thoughts and wishing for the best possible outcome.

  11. Eric,

    I cannot begin to know what you, your wife and family are going through, all I know is kids are amazing beings. This morning on NPR I heard an interview with a pediatric oncologist in Seattle http://www.npr.org/blogs/health/2013/09/13/221043643/treating-kids-cancer-with-science-and-a-pocket-full-of-hope

    Near the end of the interview a story is relayed about a young boy and how he view things, it is amazing and humbling and just now thinking of your daughter and her watching her favorite video reflects what is said in the interview.

    Your family is in my thoughts, peace.

  12. As someone who has lived with the difficult choices my parents faced when I was child with serious health issues, I am willing to bet she will understand and forgive you, if necessary. I am also willing to bet you, on the other hand, will have a harder time forgiving yourselves. Godspeed.

  13. <3, good luck & more light to all of you from Barcelona

  14. Oh, Eric, all I can say right now is that I think of you and your family every single day and hope that all your hoping is fulfilled, surprisingly and beautifully.

  15. Eric,
    I wish I had words that my take away a bit of the burden you have to carry. Thanks for being so open and clear about your situation. May God be with you, Rebecca and your whole family.
    Thinking of you very often…

  16. Pingback ::

    I’m Walking. Are You Donating? Please? | Ferrett Steinmetz

    […] Rebecca is ill.  Her proton therapy and chemo is going as well as can be expected – she has not been robbed of notable brain function yet – but she could still use your help.  So if you’ve got a few spare bucks and […]

  17. Eric, your daughter’s situation, and the feelings you experience because of it … are so heart wrenching. My experience as a single mom began when my older boys’ dad died by violence a few months before he was born.

    I went to the ER one night and tried to explain that I just needed to know that our son was alive and well inside me – that my grief hadn’t sapped life away from him. And through his early years, I would wake up in the night and watch my boy carefully to make sure he was still breathing.

    We love our children so much, and our so invested in their wellbeing. It is strong and good of you to perceive and respect little Rebecca’s need to be her own person sometimes … but not always, of course … I’m sure she needs chats and cuddling just as much as you do. And plenty of tickles of course …

    I love your love for your family. May blessings and wellness just rain copiously down upon you all.

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