White Blotches

Published 10 years, 3 months 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.

Comments (93)

  1. I am so sorry to hear that Eric. Rebecca, and your whole family, are in my thoughts.

  2. Well, my heart just broke.

    I don’t know if I believe in God or not, but it takes someone with a good deal more faith or philosophy than me to thank God for the tumors in Rebecca’s brain.

    I guess I would thank God for the opportunity you have to parent her. For the opportunity your whole family has to love her and be her family. For the wonderful miracle for her to have all of you as her family. You as her parents. How lucky she is for that.

    I don’t know if I believe in God, but I want you to know that I’m praying for all of you with all my heart. And thanking him/her for the wonderful blessing she and you have to be a family together.

    Love love love to all of you.

  3. Just terrible. My thoughts are with you all. Especially Rebecca. Really hateful news.

  4. Oh man! My heart breaks for you guys. I will be praying for a positive outcome.

  5. Keeping you all in my thoughts. <3

  6. Laura and I are thinking about you all, and hope for the best. If you ever need a shoulder, or an ear…

  7. Your family and Rebecca are in my thoughts and prayers.

  8. You know we’re holding all of you close to our hearts here…even as those hearts are breaking for what you’re going through.

    Also: you know Doug! How do you know Doug? (We are, both of us, among a vanishingly small number of alumni of a teeny-tiny college way out West, though we missed each other by a year or two.)

  9. I am thinking about all of you, like the others who post I am hoping for the best news possible. I will send my prayers for Rebecca.

  10. Such horrible, horrible news. News that no one who has been following what you have shared of your lives since last summer wants to hear. My heart, and thoughts and prayers go out to you and your family, Eric. I hope you find strength in the community of family and friends who have drawn around you, near and far.

  11. I wish you and your family strength. The power of hope is stronger than fear. My thoughts are with you all.

  12. Oh my, so sorry to hear that… I wish you again strength to go through this rough time, which may be getting even more difficult. *hugs*

  13. I am so sorry Eric. Your family is in my thoughts and prayers.

  14. I’m crushed, my friend, crushed. Still holding out hope…

  15. So sorry to read this. Rebecca and your family are in my thoughts.

  16. I am so sorry to hear this news. We are thinking of, and praying for, all of you. If you come back to Philly, we are here for you in any way you may need us.

  17. So sorry to hear this news. You and your family are always in our thoughts, Eric. Please don’t hesitate to let us know if there is anything we can do.

  18. I’m so sorry to hear of this latest development. Sending you all my thoughts and hopes for a positive outcome.

  19. I am so sorry to hear of yet another small child suffering. My daughter Katie was diagnosed with a diffuse pontene glioma in 2004 and after eight months of fighting it she died in my arms at the age of seven.

    It sucks. And you have every right to be mad as hell at God. I was. It’s too soon and too close to ponder views on God – it’s too fresh. But I thank God every day for Katie and yes, I thank Him for giving me the entire plan. It’s better than no plan at all, or no Katie at all. Picking the worst of life to demonstrate God’s plan won’t give you the entire vision. It takes time and perspective. But don’t do that now – right now, just be mad as hell at God. He’s big enough to take your criticism.

    Deal with this. Be there for your family. If you want to lean on God, do it – if you’d rather He left the room for a while that’s perfectly understandable. Believe me, when I die I will have plenty of questions (like letting kids die) for Him and I won’t hold back.

    Important thing is, you deal with it how you need to – it’s different for everyone. Just know a lot of people love you and are thinking about you. I’ve been there, it’s the worst thing in the world. Bless you – you’ll be near to my heart over this.

  20. So sorry to hear this, praying for the best possible outcome. Thank you for being so brave about sharing something so personal.

  21. I wish I had better words right now, but I’m thinking all the very best thoughts for you all.

  22. Having two kids of my own, I cannot even begin to imagine how difficult this all must be. I have nothing else I can say other than you have my deepest sympathy and I pray for a that the outcome somehow defies the odds.

  23. Oh. No. Sending Rebecca, Kat, Joshua and you r’fuah sh’leimah: a wish for compassion, speedy healing, strength, calm and renewal.

  24. I’m so sorry. You are in my thoughts.

  25. Praying from Chicago Eric,


  26. I’m sad to hear of this news. Please keep hope alive as long as possible. Let the doctors do the medical thing. If you haven’t been offered palliative care, now is the time to ask. They know best how to provide the best quality of life possible for your little girl and your family while you ride this to its conclusion; positive or negative.

    Om tare tuttare ture svaha
    My all obstacles to Rebecca’s healing be removed.
    Best wishes to you and yours, always.

    pixelsrzen. _/|\_

  27. So very sorry to hear this news. Thank you for sharing, and so eloquently. I am full of admiration, as well as empathy. It seems to me that you’re amazing parents. I know you say you have no choice and just have to do what you do to try and do your best for Rebecca, but the way you have handled yourselves and handled your thoughts and feelings ever since the first news broke in the summer has been superhuman, as well as utterly and wonderfully human.

    You are a model for every parent with a sick kid. Thank you.

    You are very much in our thoughts. Wishing Rebecca, and every one of you, all the very best, and hoping you’ll get the best possible news from now on.

  28. I’m so, so sorry to hear that Eric. All my best thoughts of support for all of you.

  29. Sending so much love and hope and prayers your way Eric. This is horrible beyond words.

  30. I hate this post.
    I am sending all the love and hope I can muster.

  31. I’m really sorry.

  32. Kim was just asking how Rebecca was. We are so sorry to hear this, and are praying for Rebecca and your family. Thank you for sharing this with us – these are courageous posts.

  33. My thoughts are with you and your family.

  34. All our thoughts and prayers for your little girl and for the family

  35. I don’t know you but a friend posted this to her wall. I will keep you all in my prayers. I believe in the power of prayer, and I know that God is holding you all in His hands. May you feel his love wrapped around you all. May Rebecca also feel His powerful
    Love and strength. Prayers are going strong.

  36. Our thoughts and prayers are with you. You have a great deal of courage to share this with us.

  37. So, so sorry for your trials and for your pain.

  38. There is nothing that can be said that will assuage the pain you are feeling now, but nonetheless I will continue to pray for you, your family, and your dear little girl.

  39. Very sorry to hear this news. Good thoughts and vibes you way.

  40. I am sorry for your family’s suffering.

  41. I am so sorry.

  42. Every time I think of Rebecca and her circumstance, the words dribble out of my head. I splutter. As I said to Simon St. Laurent immediately after he told me: “…And I think I’ve got problems.” (And I do. But not like this.)

    I’ll be over here spluttering. Let me know if there’s a single damned thing I can do to help.

  43. So sorry to hear this news Eric. Our thoughts and prayers are with you and your family.

  44. Eric, I know we’ve only met a handful of times, but I have read your blog for years and have been following this journey of yours with Rebecca and wanted to tell you how sorry I am to hear about the new tumors and prognosis. I wish I could think of the right things to say that would be poetic and eloquent and express the empathy I feel and the need I feel right now to go hug my own children, one of whom is the same age as your daughter. However, all I can say is that I am thinking of your family and that reading this brought a pain in the pit of my stomach and tears to my eyes and I can only imagine what you are feeling.

  45. It’s so hard to read this news, and my thoughts and prayers are with you and your family.

    And if there is a God, I’m quite sure that he’s not responsible for any plan that mandates a short life for Rebecca. Yet if there is a God who is behind Rebecca existing, we can still be thankful that she has lived at all, for any amount of time. And that she is now in your family and surrounded by your love.

    As I witness the many lives — and many types of lives — present in this world, I’m less convinced that life (and anything that matters, really) is best measured by time. Quality and quantity are rarely directly in proportion. A 3 minute song can be much more beautiful and impactful than a 3 hour saga.

    The real miracle, whether via God or not, is that we breathe, laugh, and live at all. For any amount of time. Nonetheless, I hope Rebecca’s life is both beautiful and long. Peace.

  46. You and your family are in my thoughts. Beaming strength and hope to you and yours, Eric.

  47. We are holding your entire family in our thoughts and in our hearts. Melissa, Ray, Ronen, Nya

  48. Childhood cancer and justice are opposites. A magical justice would allow me to give some portion of my remaining time to Rebecca. My opening offer would be five years. Oh, how I wish I could…

  49. Oh. My.

    If there was anything I could say or do at this point, you know I would. Thinking deeply and sincerely of you and your family is the best I can offer. Strength, love, and hope, my friend.

    Strength, love, and hope.

  50. I can’t even find the words to express my emotions after reading all this. All I can say that Rebecca and all your family is in my thoughts and hope for the best. Wish there was something I could do.

  51. No words months ago, and no words yet today. Not sure if it makes a difference, but sending positive vibes your way.

  52. Cannot imagine what you are going through. I will keep you and your family in my prayers.

  53. We all live on borrowed time. A seemingly perfectly healthy could pass away tomorrow, sooner than a sick patient, who knows. My point is illness and life is beyond us, so while you’re fighting the disease, please do remember to enjoy life while you can. This is only thing we have control of.

    I wish there is God and he hears your struggle and will deliver you and your family out of trouble.


  54. There really aren’t any words, but I feel compelled to say something. Our thoughts are with you. Wishing you, the doctors, other caregivers, everyone surrounding that precious little girl, the utmost in wisdom, strength, and grace.

  55. Our family read your post today and our thoughts are with you. We hope for the best for your family, especially Rebecca.

  56. Best of worlds to you and yours, Eric.
    Best of possible worlds. Much love your way.

  57. Just lost my mother-in-law to inoperable brain cancer last Sunday. I’ve been following your saga with Rebecca for a few months via Ferrett’s and Gini’s journals (I’m Lunabird over there). I don’t think I’ve commented before, but my heart goes out to you guys. I can’t imagine how tough this would be go through with a daughter.

    Brain cancer is the worst. The absolute worst. I am so sorry you guys are going through this.

  58. Without looking back at your prior posts, the image of Rebecca’s amazingly cute and smiling image is etched in my mind I am so very sad to hear of this current development. My prayers continue to be with her, you and your entire family. I cannot imagine your pain at this moment. I am, however, confident that you and Kat will do your utmost to make the best decisions for Rebecaa, whatever they may be.

  59. My thoughts and prayers go out to you and your family. Best wish to you all.

  60. So sorry to hear about the new diagnosis, Eric. You and Kat are experiencing life as deeply as it can get. My thoughts are with you, and have been throughout Rebecca’s journey with your family.

  61. Your family is in my thoughts and prayers, and I am desperately hoping for a positive outcome for Becca and for all of you.

  62. This is what I am hoping for, or praying for, and just plain want. That you all have the strength and knowledge to choose wisely. Umm, that and a damn miracle.

    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.

  63. I don’t have words, only tears. I want things to go so much better for you and for your family. I wish I could do more than pray.

  64. I am so sorry to hear the news. My thoughts and prayers go out to you and your family.

  65. There are no words. Thoughts, prayers, vides.

    Clutching my 5yo tighter today.

  66. I am so, so sorry to hear this. I am a total non-believer, so I won’t say that I’ll pray for you. I will however say that I really hope that the doctors are able to find a solution which will give Rebecca the biggest opportunity for a full life and to maximise the time that you guys have together, however long that is.

    I can not pretend to know how you must be feeling, that would be patronising and derogatory to your experience. I can empathise though. The thought of having this kind of news would destroy me, as I think it would any parent.

    All the best, and good luck.

  67. I am so sorry. This is not the news you were supposed to get. This is not the news we wanted to hear. We were all rooting. We were all hoping. We were all wishing. We are still all rooting, hoping and wishing for the best for Rebecca, you, Kat, the whole family, and your caregivers.

    We all wish there was something we could do to help. Please don’t hesitate to ask.

  68. I’m so deeply sorry to read this. No words can do justice. Be there for her. We never know when it will be our time. Cherish every moment and remember the good. Peace.

  69. Sending love and all the strength we can muster to you and yours, Eric.

  70. Eric, I’m so so sorry. My thoughts are with you, with Rebecca, and with your family at this most difficult time.

  71. I just whispered a prayer for your family.

    Can’t imagine

  72. Eric, having lost many family members from cancer I am so sorry to hear this news from you.
    I will pray for you and your family. May God give you all the strength possible to cope with whatever situation is awaiting you.
    Thanks for sharing though.

  73. I can’t imagine what it must be like to have to write that, let alone live it. I’m so sorry that Rebecca and you and the rest of your family are going through this.

  74. Eric, I am so sorry to hear about the terrible news. I wish I had words to say that could in any small way ease your pain or suffering. You have the prayers of our family and my close friends. Prayers for physical, emotional, and spiritual strength as you endure this extremely difficult trial.

  75. I am so deeply sorry to hear this. I wish the doctors and you and Kat wisdom. I wish you the ability to be merciful to yourself when you aren’t sure what to say or do or choose. I wish that you all become even closer through this. I hope for a glimmer of hope. I wish that, somehow, you feel a kind of love from everyone, from all of life itself, to carry you through, no matter how rough the ride. I wish for brilliant surprises.

  76. You saved Rebecca’s life the day you brought her into your home. In some ways she is the luckiest girl in the world. Your entire family is in my thoughts…

  77. I am so sorry. just devastatingly sad. I’m a complete stranger. and I am crying for you and your family.
    I will hold you all in my heart. and continue to pray for your family. I wish there was something more.
    love, hope and prayers.

  78. Oh. No. No words. I so hoped this news would never come, Eric. Greg and I send much love, strength and support. Let us know if there’s anything at all we can help you and Kat with. Anything. So sorry. Still hoping for something miraculous.

  79. Truly horrible. My thoughts are with you all.

  80. Eric,
    It breaks my heart to hear this news, I am a parent like you and I work for a children’s hospital. No child should know disease like this, no parent should hear news like you have heard, I see this at the hospital all too often and it angers me, it saddens me, and it scares me like nothing else can. I also ask why? It’s like life is a russian roulette, anyone can get it, you don’t deserve this, no one does, no one.
    You and your family are in my thoughts, even if we don’t know each other I share in your pain.

    As parents we don’t get the luxury of breaking down forever as we want to in moments like this, I send you strength and courage in this difficult time, and all I can tell you is surround your daughter with love because at the end of it all, the best thing we can have in our entire lives is to be loved.

  81. So heartbreaking to read the latest, hoping for better news soon for Rebecca, you and your family! She is lucky she has such wonderful parents who obviously are doing everything they can.

  82. I’m so terribly sorry to hear this news, Eric. I know it’ll be of little consolation or comfort, but my thoughts and sincerest hopes and good vibes are going out in your families direction. Here’s hoping for good news

  83. I wish I could trade my improbable recovery from a very serious brain tumor to your daughter. No family deserves to go through what you are. My heart goes out to you.

  84. We are just heartbroken to hear this news. I can’t think of anything else to say.

    The Dielman family

  85. I have stared at this comment box every day since Friday trying to find words and only finding tears. I don’t know you well. I’ve never met your family. But my heart breaks.

    I will continue to think good thoughts and hope for a positive outcome. And I realize I’m an unlikely candidate, but should you need anything, please know I’m here for you.

  86. Eric — I am so sorry to read the latest news about Rebecca’s health. You are all in my thoughts. I wish for her health and recovery. I send best thoughts to all of you.

  87. Such sad news – I am sending positive thoughts from Cape Town!

  88. Oh Eric… what terrible sad news – a post I hoped you’d never have to write…

    There are no words which could change this terribly difficult time – sending you hugs, positive thoughts and all the love in the world.

  89. so sad.
    my prayers with you Rebecca…

  90. So sorry to hear this. As a father myself I don’t know how I would react if my daughter was sick like this – I hope I would handle it with as much grace as you are showing. For what it’s worth, I’m sending good thoughts to you and your family.

  91. Thinking about your family, Eric, and the strength that you will muster together. Ian

  92. So sorry to hear this :( Thinking of you and your family.

  93. althought i don’t believe in god, i pray for you and your family

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