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The Diagnosis

Rebecca has grade 3 (anaplastic) astrocytoma.  With six weeks of proton radiation bombardment of her brain and a year of mild chemotherapy, she still has a 50% chance of dying at some point in the next five years.  Because if, after all that treatment, another tumor emerges, there are no more treatments that will help.  We will only be able to watch her die.

On the other hand, if she survives those five years, her chances of growing to adulthood are excellent.  In the meantime, her quality of life will not be terrible, however long it lasts.

There are very few proton treatment facilities in this country (or any other), but one of them is the Children’s Hospital of Philadelphia.  We have already decided that is where she will receive her treatment, which will begin after two weeks of intensive planning.  I don’t yet know where in Philadelphia we will live for the next two months; not in the hospital, as the radiation therapy is outpatient, and we will be discharged once she regains her physical strength.  I know we will find a place, one way or the other.  For now, she is still in the hospital, and we are trying to face each day as it comes.

Kat and I are still deep in shock.  Carolyn is struggling mightily to cope with everything that’s happening to her sister, her family, and her life.  Rebecca is still physically extremely weak and doesn’t want to know what the doctors said.

Me either.

I don’t have much else to say right now.

38 Responses»

    • #1
    • Comment
    • Wed 21 Aug 2013
    • 2031
    Chris Mallinson wrote in to say...

    Having been a part of a “50% talk” with a doctor, I know the feeling of shock and despair, though it takes a different toll on each of us.

    You have already done for Rebecca what she needs most. Familiar faces and voices (whether accompanied by tears or laughter) will carry her through this ordeal.

    Kids are better at this than we are.

    • #2
    • Comment
    • Wed 21 Aug 2013
    • 2034
    anne wrote in to say...

    *hugs*

    • #3
    • Comment
    • Wed 21 Aug 2013
    • 2036
    Faruk Ateş wrote in to say...

    No words can capture these emotions. Just ongoing feelings of tremendous support for you all, Eric.

    • #4
    • Comment
    • Wed 21 Aug 2013
    • 2044
    Jim Johnson wrote in to say...

    Get in touch with the hospital social work office. They should be able to spell out options for long term accommodations, like Ronald McDonald House. Would you consider allowing a fundraiser to be organized to help with you additional expenses as you care your daughter? It may not feel like good news, but it’s a relief to know what you’re really up against, sometimes. Best wishes to you and yours, always.

    • #5
    • Comment
    • Wed 21 Aug 2013
    • 2046
    Laura wrote in to say...

    Ronald McDonald house? Request a social services consult? The hospital should have social workers who can offer proven options.
    We are with you, I know I’m repeating a lot, it’s all I know to say that is comforting in this f-ed up world. Working in a hospital, I can name 10 people who have beat incredible odds, survived, and thrived. But we all know there is no certainty, and that is unacceptable and scary.

    • #6
    • Comment
    • Wed 21 Aug 2013
    • 2049
    Jeff Jones wrote in to say...

    Continued thoughts and prayers for all of you. Thank you for continuing to share these updates although I’m sure it is extremely difficult, I’m sure it’s also a little cathartic.

    • #7
    • Comment
    • Wed 21 Aug 2013
    • 2116
    Ron Stewart wrote in to say...

    Still continuing to pray for all of you, for healing, strength, and peace…

    • #8
    • Comment
    • Wed 21 Aug 2013
    • 2116
    Wendy wrote in to say...

    I wish you and your family did not have to go through this hell; I wish there were something I could say or do to make it all better, so you could wake up from this nightmare. I learned a long time ago, though, that “thought creates” – so keep humming hopeful tunes, take one day at a time, make much out of every positive thing, however small. Love each other, and know that you are loved, for it is love that will carry you through.

    • #9
    • Comment
    • Wed 21 Aug 2013
    • 2127
    Bob Monsour wrote in to say...

    Cherish each moment and each day with Rebecca and the whole family. While it’s a difficult time, find the ways to get smiles on your faces. Pray and give thanks for the time remaining. Thoughts and prayers continue to flow to all of you.

    • #10
    • Comment
    • Wed 21 Aug 2013
    • 2133
    Ivy wrote in to say...

    Sending you hugs and hopes of healing…

    • #11
    • Comment
    • Wed 21 Aug 2013
    • 2204
    Lydia wrote in to say...

    For what it’s worth, I hate this.

    • #12
    • Comment
    • Wed 21 Aug 2013
    • 2214
    Brenda Malone wrote in to say...

    This is for Shit.

    Have you thought any more about allowing a Fund Raiser like @Jim asked?

    • #13
    • Comment
    • Wed 21 Aug 2013
    • 2214
    Aaron Gustafson wrote in to say...

    I don’t even know what to say Eric except we love you all and if there is anything we can do, please do not hesitate to ask. In the meantime you will all be in our prayers!

    • #14
    • Comment
    • Wed 21 Aug 2013
    • 2215
    Ian Charnas wrote in to say...

    Eric I’m going to speak with some friends in Philly to see if there’s any extra rooms. Also if you have a paypal I’d love to chip in. I’ve always been a fan of Eric Meyer and family.

    • #15
    • Comment
    • Wed 21 Aug 2013
    • 2219
    Teresa Bailey wrote in to say...

    Eric, we met briefly at the DC conference a couple weeks ago. I have a daughter the same as Rebecca. I’m so sorry that your family is going through such a heartbreaking experience. I’ve been following all your posts and it sounds like you are surrounded by lots of supportive family and friends, which is so good to hear. I know you are only also at the beginning of discovering all the people in your life who will rally for you and Kat and help you get through this time, somehow.

    Tried to think of a way to actually help in such a helpless situation. Our former sitter moved from NYC to Philly last summer when she got married. She is a total sweetheart, very experienced with young children, very trustworthy with great references, incredibly patient and kind, etc. Our children were two and four when she sat for them, and they adored her. Am sure you are just at the beginning of figuring out logistics of being in Philly for a lengthy period, but if you need a place to start w/occasional sitting for your other children or whatever, just one thought on how I might contribute. You can contact me at teresabaileyATearthlinkDOTnet if you’d like her info.

    • #16
    • Comment
    • Wed 21 Aug 2013
    • 2240
    Paul wrote in to say...

    Eric, I am so very sorry to hear about Rebecca’s condition. Our thoughts and prayers are with you during this difficult time. May God be with you and your family. May you find strength in the love and friendship of your friends, family and those around you. I wish for you the serenity to celebrate every day you have together, and may those days be numerous beyond counting. If you need something, let us know.

    • #17
    • Comment
    • Wed 21 Aug 2013
    • 2246
    Kate B wrote in to say...

    Hi, I met you briefly at Church of the Saviour festival this summer—our daugthers are both entering 4th grade. Words escape me, I am just tremendously sorry that life has taken this turn. I found this online but agree that the social workers can help you navigate the logistics. http://www.philarmh.org/staying-with-us/faqs/
    And again, we are sending positive love and energy to your girls and family….

    • #18
    • Comment
    • Wed 21 Aug 2013
    • 2249
    David Sleight wrote in to say...

    Our thoughts are with you and your family, Eric.

    • #19
    • Comment
    • Wed 21 Aug 2013
    • 2310
    Robin2go wrote in to say...

    Jesus, Eric. Every ounce of love, compassion and prayers to you and your family as you try to comprehend your journey on this new path. I’m so glad you’re at CHOP; you can’t ask for better quality of care for Rebecca. And while you feel helpless in the face of odds that are any less than 100% normal, everyday life, trust that by being with Rebecca, giving her the love and care she’s used to having on a daily basis, you give her the ability to hang on to something normal and comforting and real in the surreal. You let her know she’s not in this alone, and that is the best gift a parent can give. Chris is right — kids are so much better at this than we are. We as parents see all the bad before the good. When things have gotten tough, I borrow from the Whedonverse: I tell my kids the first rule of family is like the first rule of flying: It’s love. Love keeps us in the air when we ought to fall down, tells you we’re hurting before we keen. Love makes us a home no matter where we are. So we’ll focus on love.

    And groin shots to the Universe.

    • #20
    • Comment
    • Wed 21 Aug 2013
    • 2315
    Scott D. Lowe wrote in to say...

    Eric –

    My thoughts are with you and your family. I also want to thank you for continuing to share your thoughts and feelings with the community. It means a lot and if there’s anything any of us can do to help you, ask.

    Best,
    Scott D. Lowe

    • #21
    • Comment
    • Wed 21 Aug 2013
    • 2327
    Mark Newhouse wrote in to say...

    I’m so sorry, Eric.

    We’ll continue to pray.

    • #22
    • Comment
    • Wed 21 Aug 2013
    • 2343
    Jason Grigsby wrote in to say...

    Aaron expressed what I wanted to say more eloquently than I can. My heart breaks. If there is a way to help, please let us know. I will continue to keep Rebecca in my thoughts.

    • #23
    • Comment
    • Thu 22 Aug 2013
    • 0017
    Stephanie wrote in to say...

    I saw a little girl with corn rows in her hair today, just like Recebba has in the photo you posted, thought of your family. Saw my roomates’s dress up pirate sword and wondered if it was the GE Adventure series that did her scans. Lit another candle. Light in the darkness.

    I’m touched that you are sharing this with us. I hope that composing your thoughts helps you organise and deal with them, sort them out do you can get through the next day. I hope that our notes are a small comfort. I hope that in a year you can look back on this as a fight your family won.

    • #24
    • Comment
    • Thu 22 Aug 2013
    • 0325
    Brian Warren wrote in to say...

    We are sending lots of love and prayers to you guys. I can’t imagine how really hard this is for you guys. I hope you find a good temporary home for a little while and that the next couple months go well.

    • #25
    • Comment
    • Thu 22 Aug 2013
    • 0708
    Sally wrote in to say...

    Became a fan of your CSS resources about 10 years ago because they are clean, simple and human … just checked in after a 5 year gap from coding and read your post about your daughter. Sending out deepest sympathy, empathy and wishes …may the Universe conspire to protect and care for you and your family…

    • #26
    • Comment
    • Thu 22 Aug 2013
    • 0730
    Paul May wrote in to say...

    Sending you and your family my best wishes, and sincerest hopes.

    • #27
    • Comment
    • Thu 22 Aug 2013
    • 0831
    Frank Henninger wrote in to say...

    The Ronald McDonald House Charity has a house on Chestnut Street. http://www.philarmh.org/our-programs/chestnut-street-house/

    • #28
    • Comment
    • Thu 22 Aug 2013
    • 0846
    Bridget Stewart wrote in to say...

    Eric,

    I am horrified that your family has to endure this kind of news. My prayers will be focused on you and your family.

    • #29
    • Comment
    • Thu 22 Aug 2013
    • 0901
    Alicia wrote in to say...

    Thoughts and prayers go out to you and your family.

    • #30
    • Comment
    • Thu 22 Aug 2013
    • 0949
    Steve wrote in to say...

    I don’t know you all, but it tears my heart out in sympathy for what you’re (and will be) going through. I think and pray for you often, Eric, and your family by name, that God would bring peace in the midst of trial. A young friend of mine had grade 1, and though still dealing with residual symptoms, he’s doing well through great care, dogged determination, outstanding support from friends and family, and the grace of God. There’s much you can do, and some you cannot; this is the life we’ve been given. Dittos to Robin2go – love is everything.

    • #31
    • Comment
    • Thu 22 Aug 2013
    • 1035
    IAmRoot wrote in to say...

    Thoughts are with you from a fellow dad.

    Would anyone with a closer relationship to the family consider creating a campaign on http://www.gofundme.com/ ?

    • #32
    • Comment
    • Thu 22 Aug 2013
    • 1040
    e wrote in to say...

    Just found your site while researching monospace font rendering in browsers (your article was helpful – thanks), and stayed around to read some more. I’m sorry to hear about Rebecca’s medical problems and I hope she’ll get through them.

    • #33
    • Comment
    • Thu 22 Aug 2013
    • 1125
    Ben Kratky wrote in to say...

    Stay strong and continue to push on. It is really all we can do as passionate, loving and caring individuals, families and society. I do believe in a ‘God’ more like a ‘universal creator’ in my mind. However, I do not buy into the the God’s Plan garbage…The God we know doesn’t have time or ability to intervene in our Mayfly esque lifespans. I see fire in Rebecca’s eyes. I hear the words of an extremely loving and caring parent. I feel the love of the family and friends that surround Rebecca in this difficult time. Medicine is bolstered by statistics all the while willpower and the passion to get better can take those statistics and throw them out the window. Stay positive, be swift and cunning and kick the cancers ass! Give it everything you can to beat it. Fire all guns, open all bomb bays. Best wishes to your family and Rebecca, who deserves the world and to live a full happy life just as much as the rest of us.

    • #34
    • Comment
    • Thu 22 Aug 2013
    • 1355
    Jim Kilmer wrote in to say...

    Oh wow… Been receiving spotty updates in my travels from G and others, but had no idea what was actually happening.

    Our thoughts are with you, and with Rebecca. If there’s anything that you need here at home, or in Philly, please don’t hesitate to ask!

    • #35
    • Comment
    • Thu 22 Aug 2013
    • 1432
    Brian Fling wrote in to say...

    Eric, my thoughts are with you and your family. If there is anything you ever need, I’m here for you.

    Having worked at Seattle Children’s, I know that Children’s Hospital of Philadelphia is consistently one of the best pediatric hospitals in the world. Rebecca will be in very good hands and will receive the best care.

    • #36
    • Comment
    • Thu 22 Aug 2013
    • 1546
    Virginia wrote in to say...

    Great love and caring for you all, and especially for Rebecca.

    • #37
    • Comment
    • Thu 22 Aug 2013
    • 2037
    Kris wrote in to say...

    Eric and family,
    My heart goes out to you and your family and wish you the best. As for Proton Therapy, I am glad there are people in this world way smarter than I. Proton is painless and the best possible way to deliver radiation. It does a great job keeping pass through radiation exposure to a minimum. I was treated with proton at UFPTI in Jacksonville and can’t say enough great things about my experience. Be strong for each other.

    • #38
    • Comment
    • Fri 23 Aug 2013
    • 2301
    David wrote in to say...

    Eric
    I don’t know you from a bar of soap but I have kids and, of all the nasty, horrible things that can happen to you, seeing harm come to your kids has to be at the top of the list.
    My heart goes out to you and your family. I’m not a religious person but I will be doing the agnostic equivalent of praying for you and Rebecca.
    Good luck.

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