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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.

42 Responses»

    • #1
    • Comment
    • Sat 29 Mar 2014
    • 1538
    Mario Hernandez wrote in to say...

    My heart is broken and I am out of words. It’s amazing how without knowing you or your family, I feel we are friends because I have been following you closely as part of my career as a web developer.

    You and your family are always in my thoughts and I wish there was something I could do.

    Love,

    Mario Hernandez

    • #2
    • Comment
    • Sat 29 Mar 2014
    • 1547
    Meri Williams wrote in to say...

    They are such amazingly lucky kids, to have you as parents. I can’t express how much I admire your grace under this insane pressure, under these terrible, unfair circumstances.

    You could have crumbled and broken under the pressure; instead you’ve taken it, absorbed it and compressed into diamonds.

    Sending you all the good thoughts possible.

    • #3
    • Comment
    • Sat 29 Mar 2014
    • 1614
    Hick Crone wrote in to say...

    I will hold on to hope. That’s what your girls are doing, I expect, partly through their parents’ example and partly because there seems to be no other choice. Your love-filled family inspires. You are all so brave.

    • #4
    • Comment
    • Sat 29 Mar 2014
    • 1638
    Wendy wrote in to say...

    Eric, there are just no words in any language that can even begin to express what you and your family are feeling right now. Your post sounds numb, and no one can blame you, for no parent should have to go through what you’ve already experienced, nor what appears to lie ahead of you. I will hold out Hope, and pray for a miracle for your darling little girl.

    • #5
    • Comment
    • Sat 29 Mar 2014
    • 1742
    Deborah wrote in to say...

    Can we help to make Disney/ Cinderella a reality? I’d like to help if I can….please have Kat message me …

    • #6
    • Comment
    • Sat 29 Mar 2014
    • 1743
    alejandro moreno wrote in to say...

    :**( <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 no words <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 :**(

    • #7
    • Comment
    • Sat 29 Mar 2014
    • 1750
    Naomi wrote in to say...

    You don’t know me, but I’ve seen your notes and your posts via a friend’s social media feeds. I’ve been praying, and I am so sad. It’s been a spring full of death and illness for me, but this one hits me hardest.

    • #8
    • Comment
    • Sat 29 Mar 2014
    • 1809
    Doug Pascover wrote in to say...

    We’ll pray and cross our fingers for whatever there is to hope for, think of you all and especially Rebecca. Cedar point for sure.

    • #9
    • Comment
    • Sat 29 Mar 2014
    • 1840
    rendered speechless (@dharawal) wrote in to say...

    I have no words, but cling on to hope, hope for a better outcome, hope for a treatment that allows you to be have more quality time together. As a Mum my heart is breaking, sending you all love and light.

    • #10
    • Comment
    • Sat 29 Mar 2014
    • 1848
    Tracey wrote in to say...

    I am so very, very sorry to read this news. You may not recall meeting my husband and I when we were in the midst of our adoption journey. I’ve been following your blog since and your family has been, and will continue to be, in my prayers.

    If you don’t know about it already, Give Kids The World here in Florida can make magical vacations happen on very short notice: http://www.gktw.org/about/

    • #11
    • Comment
    • Sat 29 Mar 2014
    • 2100
    Heidi Voltmer wrote in to say...

    I am so sorry to hear this news. You and your family are into thoughts and I will be praying for a miracle for Rebecca.

    • #12
    • Comment
    • Sat 29 Mar 2014
    • 2122
    Jane wrote in to say...

    I’m so sorry.

    • #13
    • Comment
    • Sat 29 Mar 2014
    • 2149
    Mary Howe wrote in to say...

    This is heart-breaking–I’m so sorry. Rebecca has been in my daily prayers since last summer. Mary (Evan’s Mom)

    • #14
    • Comment
    • Sat 29 Mar 2014
    • 2230
    Monica Anderson wrote in to say...

    In the face of such an overwhelming, unfathomable, completely heart-shattering situation, I’ll be holding onto hope that Rebecca will celebrate her birthday surrounded by friends and have her wishes come true with her family by her side.

    • #15
    • Comment
    • Sat 29 Mar 2014
    • 2333
    Anna wrote in to say...

    Eric, I’m so very sorry to hear the latest prognosis… my heart is breaking for you and your family

    There is still a chance to make Cinderella dream come true. An email to local TV station might make it happen…

    • #16
    • Comment
    • Sun 30 Mar 2014
    • 0031
    Roberta wrote in to say...

    Dear Eric, I’ve been a huge fan of your CSS work for many years. The last few years I’d gotten involved in other things and so only very recently I decided to check back in and see what you were working on lately…..

    I was devastated to learn about Rebecca’s cancer. My thoughts and prayers of hope and comfort go out to all of you. I’m so so sorry, no parent or child should have to go through this. Rebecca is lucky to have such a loving and caring family at her side. I fervently hope and pray for a miracle, that her cancer will go into recession. Be strong meanwhile, and know that many of us are out there praying for her and all of you.

    • #17
    • Comment
    • Sun 30 Mar 2014
    • 0051
    Mark Newhouse wrote in to say...

    As much as I hate having to read these words, I appreciate you posting them. We continue to pray for peace and strength for you all as you go through this…

    • #18
    • Comment
    • Sun 30 Mar 2014
    • 0108
    Dave Lewis wrote in to say...

    I’ve thought of Rebecca every day since the awful news of the new tumor. I am so sorry for her, and you all, and so admiring of your courage.

    • #19
    • Comment
    • Sun 30 Mar 2014
    • 0224
    Marya wrote in to say...

    Just one of the many is who is holding your family in my heart.

    • #20
    • Comment
    • Sun 30 Mar 2014
    • 0931
    David Weinraub wrote in to say...

    I’m so sorry to hear this development. You and your family are in our thoughts.

    • #21
    • Comment
    • Sun 30 Mar 2014
    • 1026
    Rob L. wrote in to say...

    So many of us wish we could make this all go away, the unfairness of it all is just so hard to believe. The strength you’ve shown so far in the face of this, though, is humbling and inspirational. Hold on to each other, keep moving forward with the love you all share as your guide.

    • #22
    • Pingback
    • Sun 30 Mar 2014
    • 1031
    Received from Flashlight Redux: Checkmate | Ferrett Steinmetz

    […] Yesterday was checkmate. […]

    • #23
    • Comment
    • Sun 30 Mar 2014
    • 1342
    hawkse wrote in to say...

    Here I sit half a world away, three kids about Rebeccas age on the couch watching an evening movie before bedtime and I dread clicking that update in “Thoughts from Eric” I see waiting in my feedreader. I’m so very, very sad for you all and the unfairness of it all. At the same time, I learn to appreciate every single day of my rich, healthy and incredibly privileged life more. It feels strange to write this but thank you for sharing. I intensely wish for that miracle. You are in my thoughts. Every. Single. Day.

    • #24
    • Comment
    • Sun 30 Mar 2014
    • 1533
    Dawn wrote in to say...

    I know about your family through Ferrett and Gini and want you to know that for what very little it’s worth you’re all in my thoughts and prayers.

    • #25
    • Comment
    • Sun 30 Mar 2014
    • 2157
    Adam Reisman wrote in to say...

    Guys – I am incredibly saddened to hear this terrible news. Your whole family has fought through this with so much grit and grace. Our prayers are with you, as are our hopes that you and Rebecca are able to celebrate her birthday and have quality time with her well beyond this.

    • #26
    • Comment
    • Mon 31 Mar 2014
    • 1010
    Rachyl wrote in to say...

    Sending love to you and your family.

    • #27
    • Comment
    • Mon 31 Mar 2014
    • 1929
    Robin2go wrote in to say...

    I have no words to describe the dull despair I feel at this latest post. Seven months ago, we were walking back from dinner and you were showing me a picture of Rebecca laughing and joyous. It doesn’t seem possible that you and your family have come to this point in what feels like the blink of an eye. This is cruel heartbreak, and I’m so sorry your family must continue to travel this path. Your posts resonate with unspoken grace, fear, love, and heartache which speaks to the parent in me. I cannot imagine what you are feeling; know that I ache for your family. I know the time you have left is most precious, and I pray you can find the grace in the moments, and make the most of them.

    Let us know if we can help make those moments magical.

    • #28
    • Comment
    • Mon 31 Mar 2014
    • 2356
    Ed wrote in to say...

    Thinking of your whole family, Eric. Know that there are many of us that don’t have the words to tweet or comment, but that we’re thinking of Rebecca, you and your family.

    • #29
    • Comment
    • Tue 1 Apr 2014
    • 0148
    Jesse wrote in to say...

    Still here, thinking of you and Kat. Don’t know what else to say, except I’m praying for you…

    • #30
    • Comment
    • Tue 1 Apr 2014
    • 1320
    Lacey wrote in to say...

    Eric, I’m so sorry. Your daughter and your family are in my thoughts and prayers. Your internet community sends you a hug…

    • #31
    • Comment
    • Tue 1 Apr 2014
    • 1415
    Jeremiah C. Foster wrote in to say...

    As a father, I am devastated to hear of your tragedy. I hope you find some peace and I think you and your family are very brave.

    • #32
    • Comment
    • Tue 1 Apr 2014
    • 1419
    Kenan wrote in to say...

    I am very very sorry. I have been following your posts and hoping that Rebecca would beat this. I will continue hoping that a miracle will happen.

    • #33
    • Comment
    • Tue 1 Apr 2014
    • 1555
    Ben wrote in to say...

    As a parent my heart goes out to all of you – I am deeply moved by the quiet strength of your blog posts at such a time of significant emotional turmoil, and as a family we are sending your family all positive thoughts and hoping for some positive news.

    • #34
    • Comment
    • Tue 1 Apr 2014
    • 1954
    Bosnian wrote in to say...

    Eric – ….there is nothing that I can add exept to thank you for enriching and touching the lives of all around you including your kids!! Best wishes for you and your family.

    • #35
    • Comment
    • Tue 1 Apr 2014
    • 2109
    Mike McP wrote in to say...

    Eric, I am so very, very sorry to read about all you, your daughter and whole family are going through. Truly heart-breaking. I promise to pray for Rebecca, you, your wife and children. I know that there isn’t much that I can do beyond sending many prayers and love. Hopefully it can help some. As devastating and lonely this must feel, please know you are not alone. Thank you for so bravely sharing your story and letting people like me (who you have never met) help in some way. My entire life has taught me the profound healing power of prayer. So please know that many people like me are praying for all of you.

    • #36
    • Comment
    • Wed 2 Apr 2014
    • 0842
    Ben a wrote in to say...

    A lot of my career success has come from your contributions to the community throughout the years. Your CSS reset is still in use in a lot of projects I’ve produced.

    I would like to give back somehow. If there is a charity that I can donate to in Rebecca’s name, or any other way I can provide support, please let me know. I’m sure there are others who feel the way I do.

    • #37
    • Comment
    • Wed 2 Apr 2014
    • 1554
    Stephanie Leary wrote in to say...

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

    • #38
    • Comment
    • Wed 2 Apr 2014
    • 1812
    Eric wrote in to say...

    Read this and the other posts with tears in my eyes. Very sorry to hear about your little girl :(.

    • #39
    • Comment
    • Wed 2 Apr 2014
    • 2357
    amanda wrote in to say...

    I am so unbelievably sorry. I can’t find the words. only tears. I will continue to say prayers for Rebecca + for your entire family. I wish there was some thing I could do to change this.
    I am so, so sorry.

    • #40
    • Comment
    • Thu 3 Apr 2014
    • 1223
    Jeremy Carlson wrote in to say...

    Nothing I can say that would matter, other than I will be thinking of you and your family every night and praying for hope.

    • #41
    • Comment
    • Thu 3 Apr 2014
    • 2158
    Carrie Rice wrote in to say...

    Eric & family, I’ve just read your blog for the first time today. Our 2 year old daughter is in remission from a rare form of kidney cancer called CCSK and there is a high probability of recurrence. Reading your posts evokes very familiar feelings of overwhelming helplessness and sadness. It strikes so close to home. I can only hope to have the same courage and strength that you have as you support your little girl if we are ever faced with such a prognosis. Given how small our pediatric cancer community is, I wanted to reach out to you and if nothing else, let you know that we understand your fears and your journey. Even as a stranger, please let us know if there’s anything we can do for you.

    • #42
    • Comment
    • Mon 7 Apr 2014
    • 1814
    Carolyn wrote in to say...

    We don’t know each other, but I’ve been following updates via Ferrett. I have been hoping for the best, and I am so very sorry to hear this news. You and your family are in my thoughts.

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