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MESSAGE BOARD Archive July 2004

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Saturday, July 31, 2004 -- 23:09:58 (EDT)
Name: Madi, Lexi, Lawrie and Curt
Location: Seattle,
  • We love you. Our thoughts and prayers are with you. Deep peace to you.

    M,L,L and C

    Saturday, July 31, 2004 -- 22:37:46 (EDT)
    Name: Kathy Hoar -- Email:
    Location: Boca Raton, Fl USA
  • Mary and Simon,
    You and your family are in my prayers. What a wonderful family you are. Simon, you are my Hero. What a brave boy you are.
    God bless you.
    Aunt Kathy to Matthew-age 4, nb IV

    Saturday, July 31, 2004 -- 21:58:04 (EDT)
    Name: Angel Michaela's mom~Kim -- Email:
    Location: Lancaster, PA USA
  • My prayers for your peace. I am sorry!

    Saturday, July 31, 2004 -- 21:05:56 (EDT)
    Name: Lou -- Email:
    Location: Knoxville, TN USA
  • Dear Mary, I will whisper your sweet words in prayer" Go in peace".May you &amp your husband stay strong these next few hard days. Josh will always remember Simon from Slong's NY. I have his picture in Josh's scrapbook.Faith, Hope &amp Love Lou/mom to sherry/grandmother to Josh dx.NBIV 6/01

    Saturday, July 31, 2004 -- 21:05:12 (EDT)
    Name: Cathy Rezmer -- Email:
    Location: Bay City, MI USA
  • Mary... There are no words that I can think of right now to tell you exactly how I feel. I am praying so hard that Simon is peaceful and comfortable. You inspire me so much with your entries. I hope I can have that same strength and way of thinking in the future. Please give Simon a hug from me and Shane. He is such a brave, big boy.

    Saturday, July 31, 2004 -- 20:56:29 (EDT)
    Name: Christie, Jerry, Ben, &amp Gracie -- Email:
    Location: Ann Arbor, MI
  • Hi Simon Miriam Mary and Markus
    We wish like anything we could be with you right this minute to remind you how much you mean to us. May Simon's days be peaceful.

    Saturday, July 31, 2004 -- 20:27:09 (EDT)
    Name: Mia -- Email:
    Location: Staffa, ON Canada
  • there is a wonderful energy around your posts of Simon's passing. He is fortunate to have your love and your " understanding" around to help him reach the new level of existance.
    Yesterday evening i connected to him in spirit. He was outside of his body of course ( most of the kids are for most of the time before death) and he was calm and very self-confident as to what lies ahead and what is happening.
    I felt he is well-prepared and without fear.
    Sending love and healing for all of you

    Saturday, July 31, 2004 -- 19:48:21 (EDT)
    Name: Kay Beaton -- Email:
    Location: Park CIty, UT
  • I wanted to add this to my last post with more detail on the Lemonade Stand photos. To view them most easily, you need to copy &amp paste this link into your browser:
    SHARING CODE: A460F93B105
    I like to put the slide viewer on 5 minute intervals, and let the show come to you. Please email me at if you have problems.

    One of our favorite lemonade stand attendees were father and daughter on bicycles - we had signs from the highway saying, "One Mile this way." They told us they had ridden 2 miles out of their way to get this "Alex's Lemonade" and it better be good. They got refills, cookies, a rest on the swings, and they were thrilled!

    In peace &amp love, Kay

    Saturday, July 31, 2004 -- 19:27:58 (EDT)
    Name: Kay Kirk Heather Tyler -- Email:
    Location: Park City, UT
  • Today we held a very successful Alex's Lemonade Stand in Park City in honor of Simon and were thrilled with the support from our friends and neighbors. We raised $275 in cash and have dozens of people who have said they are donating online.

    I wanted to share some of the bright &amp colorful images of all the children involved and feel blessed to have been a part of this - all in Simon's name. You can access the photos at: or (Sharing Code: A460F93B105).

    We send peace and love and hugs and some of Alex's lemonade! Love, Kay

    Saturday, July 31, 2004 -- 14:51:34 (EDT)
    Name: carol longsworth -- Email:
    Location: Oberlin, OH
  • Simon, Miriam, Mary, Marcus and Grann, Your lives as individuals and your life as a famiy have indeed inspired love beyond all believing. We rejoice in the beautiful way you have shared Simon's journey with us. God IS with you. May all the prayers and love on your behalf, from all over the world, strengthen you and may your feel the comfort and peace of God's everlasting arms embracing and upholding you. P.S. We are singing the song you mentioned, too, in Simon's honor: Go now in peace.... etc.

    Saturday, July 31, 2004 -- 14:08:18 (EDT)
    Name: Deborah Gurt -- Email:
    Location: Northfield, MN USA
  • Dear Simon, Miriam, Mary, and Markus-
    Let me add our voices to the many here. Our hearts are full to breaking with happy memories of shared times together and sadness at the world's diminishment as Simon takes his leave.
    Sending our love and care to you all.
    Deborah, Marek, Lev and Jacob

    Saturday, July 31, 2004 -- 13:15:28 (EDT)
    Name: Lori Weismann -- Email:
    Location: Cupertino, California USA
  • We are praying too. Thoughts are with you all.

    Saturday, July 31, 2004 -- 10:33:44 (EDT)
    Name: Anne, Tom, and Johannes -- Email:
    Location: Northfield, MN USA
  • Dearest Simon, Miriam, Mary, and Markus,

    We are holding you throughout the day, every day, in our hearts and minds, sending as much light and love as we can to help you on this painful journey. You are all the strongest people we know, and we are honored that you are sharing your journey with us.

    all our love to all of you, and peace and light to sweet Simon,

    Anne, Tom, and Johannes

    Saturday, July 31, 2004 -- 02:40:46 (EDT)
    Name: Blan -- Email:
    Location: Dublin, Ireland
  • My very best wishes and love to you all at this most difficult of times.

    Saturday, July 31, 2004 -- 02:28:47 (EDT)
    Name: Justine, Angel Lance's Mom -- Email:
    Location: Lake Oswego, Oregon USA
  • Mary,
    I was happy to read all the wonderful posts from so many that care about you and to read your own entry about laying down with Simon.
    I have a candle lit for your family tonight.
    I am so incredibly, profoundly sorry that you are on this journey of hurt.
    I am sending you love and just to tell you that Simon, you and your precious family have not been far my thoughts constantly... Im holding you in the closest part of my heart and soul. I am feeling what you are going thru and will be going thru, I just want you to know "always" that I am here for anything that I can "possibly" do to help ease any part of this for you. Of course we are far from eachother, but if you want talk, scream, cry, laugh, anything!!!!
    I wont post my number to your guest book. Mary, you know how to get a hold of me when the time is right for you.
    I love you all,
    and I am sending my heartfelt wishes that Simon is comfortable..
    Sweet baby boy.

    Friday, July 30, 2004 -- 22:07:45 (EDT)
    Name: shelli -- Email:
    Location: , Nebraska
  • Simon, you are the strongest little boy we know of. Our thoughts, prayers and overflowing tears are with you and your family. We may not actually 'know' you but we love you all more than words can say.
    Jeff Shelli and Emma (dx with NB&ampOMS 8/02)

    Friday, July 30, 2004 -- 22:03:39 (EDT)
    Name: Jill Steinberg -- Email:
    Location: Seattle, WA United States
  • Dear Mary and family,
    Thank you for showing immeasurable generosity and strength by keeping us informed about Simon through this special web site. I hold you in my heart and send you my love. -- Jill

    Friday, July 30, 2004 -- 21:53:37 (EDT)
    Name: kathy -- Email:
    Location: san antonio, tx
  • Dear Mary, Markus, Simon, and MIriam,
    We send our love to Simon and all of you
    once again.
    Kathy, Nathan, Marina, and Jane

    Friday, July 30, 2004 -- 21:49:02 (EDT)
    Name: Liz, Mike, Emma, and Lucas -- Email:
    Location: Ann Arbor, MI
  • We send you all the loving thoughts we have tonight. We have tears in ours eyes from the loss and pain, and smiles on our faces for the beauty and love you've let all of us in on.

    Friday, July 30, 2004 -- 21:21:34 (EDT)
    Name: Jonel Browning -- Email:
    Location: Pittsburgh, Pa USA
  • Mary and family, I just wanted to let you know that I am still holding all of you in our thoughts and prayers. Jonel mom to Elijah nb4 dx 3-14-03 relapsed 6-04

    Friday, July 30, 2004 -- 20:41:16 (EDT)
    Name: Dina and Dick -- Email:
    Location: Oberlin,
  • Simon, Mary, Markus, Miriam, and Ann-
    We think of you often and waft warm and loving thoughts your way,
    Your sad friends, Dina and Dick

    Friday, July 30, 2004 -- 20:04:21 (EDT)
    Name: Sally Blodgett Olson
    Location: Seattle, WA
  • Everyone,
    I just spoke with Mary on the phone as she was laying next to her dear Simon. She said she spent hours today holding him as he rests, no longer speaking but peacefully sleeping. Markus held him too, and they all lay together to rest.
    I spent last weekend with this remarkable family. I've known Mary my whole life, but through this I have met in her one of the strongest, bravest women I have ever known. Mary and Markus are loving, patient, and wise parents. Let us all feel joined in our prayers and love for Simon on his journey and his family as they let him go. The support you all send is palpable in their household. Know that every thought, gesture and gift truly sustains them.
    with love,

    Friday, July 30, 2004 -- 17:53:38 (EDT)
    Name: Jenni Gretzema -- Email:
    Location: Ann Arbor, MI
  • Dear Simon and Family,

    Please know I am thinking of all of you tonight and sending you thoughts of peace and comfort.

    Jenni Gretzema (Mott Child Life)

    Friday, July 30, 2004 -- 17:47:13 (EDT)
    Name: allyson -- Email:
    Location: London, England
  • Mary, Markus, Miriam and Simon,

    Peace, strength and love.


    Friday, July 30, 2004 -- 15:11:03 (EDT)
    Name: Lisa Harris -- Email:
    Location: Ann Arbor, MI USA
  • To Markus, Mary, Miriam and Simon - You are all in my thoughts and prayers in this very sad time. My 6 year old cousin is his 2nd year of fighting neuroblastoma and you all have given us such strength through this web-stie to continue the fight and I am so sadden to hear that Simon is losing the fight but what courage he has taught me! May Simon be in peace.

    Friday, July 30, 2004 -- 14:50:21 (EDT)
    Name: Judi Stonik -- Email:
    Location: Ann Arbor, , MI USA
  • I have been in total awe of the courage, love and strength here on these pages but most importantly from Simon. Peace and love be with you all.

    Friday, July 30, 2004 -- 13:35:35 (EDT)
    Name: Amy Harris -- Email:
    Location: Ann Arbor, MI USA
  • I've just read the latest news. My heart goes out to all of you and I am holding you in my thoughts. What an incredible impact Simon has had on so many people. He has taught us how to love and treasure our family and friends more deeply. I wish you strength and peace. -- Amy

    Friday, July 30, 2004 -- 13:06:26 (EDT)
    Name: Ellen Roussey -- Email:
    Location: Ann Arbor, MI US
  • Mary, Markus, Miriam, &amp Simon,
    May the spirit of love surround you all, and may all of you be in peace. I am glad that you are able to have this time with one another, passing the time as Simon and you choose. We are thinking of you and send our love to you all. Ellen, Jamie, Cully, and Alex

    Friday, July 30, 2004 -- 13:02:09 (EDT)
    Name: rowan, steve annette
    Location: Oakland, CA
  • We love you! Sending a warm, strong embrace from the three of us to the five of you. We add our support to all that surrounds you. We hope the most connected passing will bless you one and all.

    love a,s,r

    Friday, July 30, 2004 -- 12:52:18 (EDT)
    Name: Karen , Mark, &amp Kirk -- Email:
    Location: Ann Arbor, MI
  • Thanks so much for providing what must be such difficult updates to type.

    We are adding our warm wishes to so many others flowing towards you from Michigan and Ohio--tell Simon I'll bet airplanes all over the Great Plains are feeling turbulance because of it!

    Friday, July 30, 2004 -- 12:25:59 (EDT)
    Name: Katherine Lawrence -- Email:
    Location: Ann Arbor, MI
  • Dear Mary, Markus, Miriam, and Simon, My heart sank upon reading the latest news. You have all been so brave and loving throughout this long, difficult time. Your whole family is a treasure, and I hope that Simon's last moments are as you wish.
    With love to you all,

    Friday, July 30, 2004 -- 11:57:27 (EDT)
    Name: Rebecca
    Location: Oberlin,
  • Dear ones,
    We send you all of our love and strength. We're holding you in our broken hearts and wishing you peace. Kiss sweet Simon for us.

    Rebecca, Randy, Emma and Schuyler

    Friday, July 30, 2004 -- 10:55:30 (EDT)
    Name: kay kirk heather and tyler -- Email:
    Location: Park City, UT
  • We are holding an Alex's Lemonade Stand on Saturday in Park City in Simon's honor and we will be dancing and celebrating in Simons honor. Go now in peace and let the spirit of love surround you. You are loved by more people than you know.
    your park city friends

    Friday, July 30, 2004 -- 10:40:14 (EDT)
    Name: Ethel Lautenbach -- Email:
    Location: Gran Rapids, Michigan USA
  • God never leaves you alone....
    He never forgets about you...
    He looks out for you and takes care of you.
    You are more importand than the birds he feeds and provides for.
    Trusting him means to rest in him as your shield, your covering,
    your provider, your defender and friend.
    It means freedom from worry, anxiety, and fear.
    It means peace to your mind and joy to your soul.
    Come to Him: He is waiting.....
    Lean on Him: He is strong...
    Talk to Him: He is listening...
    Depend on Him: He will never let you down...
    He holds you within the hollow of His hands
    to keep you keep you safe...
    to deliver you from all your fears.

    You are in my prayers.

    Friday, July 30, 2004 -- 10:01:14 (EDT)
    Name: Karen Merrill -- Email:
    Location: Amherst, MA
  • Even from so far away, we can see how much love and comfort Simon has had surrounding him these last days. You are all in our hearts and thoughts. Karen

    Friday, July 30, 2004 -- 08:58:35 (EDT)
    Name: Rachael Coleman -- Email:
    Location: SLC,
  • Box of Rain

    Look out of any window
    any morning, any evening, any day
    Maybe the sun is shining
    birds are winging or
    rain is falling from a heavy sky -
    What do you want me to do,
    to do for you to see you through?
    For this is all a dream we dreamed
    one afternoon long ago

    Walk out of any doorway
    feel your way, feel your way
    like the day before
    Maybe you'll find direction
    around some corner
    where it's been waiting to meet you -
    What do you want me to dom
    to watch for you while you're sleeping?
    Well, please don't be surprised
    when you find me dreaming, too

    Look into any eyes
    you find by you, you can see
    clear through to another day
    Iknow it's been seen before
    through other eyes on other days
    while going home -
    What do you want me to do,
    to do for you to see you through?
    It's all a dream we dreamed
    one afternoon long ago

    Walk into splintered sunlight
    Inch your way through dead dreams
    to another land
    Maybe you're tired and broken
    Your tongue is twisted
    with words half spoken
    and thoughts unclear
    What do you want me to do
    to do for you to see you through?
    A box of rain will ease the pain
    and love will see you through

    Just a box of rain
    wind and water
    believe it if it you need it
    if you don't just pass it on
    Sun and shower, wind and rain
    in and out the window
    like a moth before a flame

    It's just a box of rain
    I don't know who put it there
    Believe it if you need it
    or leave it if you dar
    But it's just a box of rain
    or a ribbon for your hair
    Such a long, long time to be gone
    and a short time to be there

    ~Robert Hunter

    Friday, July 30, 2004 -- 05:46:41 (EDT)
    Name: Seung-Yoon Rhee -- Email:
    Location: Ann Arbor, MI
  • Dear Markus, Mary, Simon, and Miriam,

    My thoughts and prayers are always with you.

    Friday, July 30, 2004 -- 01:56:29 (EDT)
    Name: Kaitlyn -- Email:
    Location: Rockingham, WA Australia
  • Simon, a week or so ago I sent you a postcard all the way from here in Australia, I hope it arrives soon.
    Love Kaitlyn, your NB buddy.

    Friday, July 30, 2004 -- 01:52:43 (EDT)
    Name: Elena and Tihomir -- Email:
    Location: SLC, UT
  • Simon, Miriam, Mary and Markus,
    We hope our warm and comforting thoughts and prayers for a peaceful night reach you all,
    With love, great respect and admiration,
    Elena and Tihomir Asparouhov

    Friday, July 30, 2004 -- 01:10:41 (EDT)
    Name: Kris Hopkins -- Email:
    Location: Clinton, NY
  • Dear Mary, Markus, Simon, and Miriam:

    I was so sorry to read about the recent turn of events. My heart is aching for you....

    I will pray for Simon's comfort and that all of you will continue to find inside yourselves, and in the love pouring out to you, the strength and courage needed to carry you through this part of the journey.

    We continue to hold you gently in our thoughts and prayers.

    Wishing you peace,

    Friday, July 30, 2004 -- 01:10:41 (EDT)
    Name: Whitley -- Email:
    Location: Ann Arbor, MI USA
  • It's just after 1 a.m. in Ann Arbor, and I have just read the latest. Mary, Marcus, Miriam and Simon, all over this country, and all over the world, hundreds of people are holding you in their hearts, sending prayers spoken, dreamed and sung in your direction. My prayer is among them. Hugs, tears, true, heartfelt honor that you would share this with us.
    Whitley from Ann Arbor

    Friday, July 30, 2004 -- 00:56:55 (EDT)
    Name: marianne mueller -- Email:
  • Simon, Mary, Markus and Miriam,
    You are in my thoughts and prayers... with much love, Marianne

    Friday, July 30, 2004 -- 00:16:55 (EDT)
    Name: Emma Mason -- Email:
    Location: Oberlin, OH USA
  • Our hearts and prayers are with you in this difficult time. Much love to all--especially Simon. Emma and Del Mason

    Friday, July 30, 2004 -- 00:13:55 (EDT)
    Name: Michael -- Email:
    Location: Baileys Harbor, Wisconsin USA
  • Hi, Simon. I'm here with you . My three cats said we needed to drop in and say hi. big hugs, Lil Feller. We love you tons.

    Friday, July 30, 2004 -- 00:12:55 (EDT)
    Name: Rachael Coleman -- Email:
    Location: SLC,
  • (((Markus, Mary, Miriam, Simon, Grann))) I feel so honored that you share these most sacred of times with us all. I hold you near.

    Friday, July 30, 2004 -- 00:09:53 (EDT)
    Name: Rachel Kimball -- Email:
  • Simon,
    We are all thinking of you and your family. What a gift you are to your family and all of us who know you. Our prayers are for your comfort and peace.
    All of our love,
    Miss Rachel, Miss Barb, Miss Judy, Miss Misha, Miss Julie, Miss Tad.

    Friday, July 30, 2004 -- 00:03:28 (EDT)
    Name: Mary Craig -- Email:
    Location: Salt Lake City, UT USA
  • We are settling down for the night here. Simon is resting peacefully. His heart continues to pump vigorously. His breathing is still very moist-sounding and regular.

    Someday we may be able to describe the moments of this time with Simon as he fades away. He is precious. The time is precious. Miriam is a wonderful sister.

    Goodnight. And thank you all for the warm embrace of support and love.--Mary

    Friday, July 30, 2004 -- 00:03:10 (EDT)
    Name: Rachael Coleman -- Email:
    Location: SLC,
  • Im singing along with you. Blessings, love, strength &amp ease to you all.

    Thursday, July 29, 2004 -- 23:57:40 (EDT)
    Name: Grandma Sweet -- Email:
    Location: ASHLAND, OH U.S.A.
  • Simon and family you are in our hearts and prayers. It was an honor to have met you and your family.I care very much for all of you. It was so great to see you play with the kids and how you were so worried about little Garrett. We sent our love to you Simon and your family and God be with all of you.
    Sweet Hugs From The Sweets &amp Sweet Angel Luke xxxxxooooo

    Thursday, July 29, 2004 -- 23:33:46 (EDT)
    Name: Jennifer Click, Evan and Carolyn Coveney -- Email:
    Location: Falls Church, VA
  • Mary, Markus, Simon, and Miriam,
    Thinking of you always, wishing you strength and peace today and in all the days that follow. With gentle hugs, Jen, Evan and Carolyn

    Thursday, July 29, 2004 -- 23:33:38 (EDT)
    Name: barbara blodgett -- Email:
    Location: new haven, ct usa
  • You are not alone. Love is stronger than death! Peace be with you.

    Thursday, July 29, 2004 -- 22:26:53 (EDT)
    Name: Jeri Lea -- Email:
    Location: Brighton, MI USA
  • Dear Mary and Markus,
    I am so sorry to read about Simon's progressing illness. I have been visiting "simon's place" every couple of days and continue to be inspired by your family's strength. Please know that you all are in my thoughts and prayers.

    Thursday, July 29, 2004 -- 22:26:23 (EDT)
    Name: Aunt Julie
    Location: Toronto,
  • Mary, Markus, Miriam and Simon - Hugs and kisses to all of you. Love from all of us in Toronto.

    Thursday, July 29, 2004 -- 22:04:34 (EDT)
    Name: Rebecca -- Email:
    Location: Lansing, MI United States
  • Simon, You are not alone in your journey. My family is praying for you and your are in out thoughts
    Mother to Onika 6months

    Thursday, July 29, 2004 -- 21:42:19 (EDT)
    Name: Jamie Eager -- Email:
    Location: Ephrata, PA USA
  • Simon and family,
    You are in our thoughts and prayers, we hope for a miracle.
    mom to brandon 5 dx 4/2004, Shay 11, shawna 13, Matt 16

    Thursday, July 29, 2004 -- 21:06:05 (EDT)
    Name: Abe and Lisa -- Email:
    Location: SLC, Utah
  • Dear Simon
    We love you and pray for you.You are in our hearts each and every day.
    You are our hero.
    Abe,Sara and Lisa

    Thursday, July 29, 2004 -- 20:30:54 (EDT)
    Name: Justine - Angel Lance's mommie -- Email:
    Location: Lake Oswego, OR USA
  • Mary, Simon and family,
    I have been so mindful of all of you this last week, especially at the NB conference. Reading your post today brought me to my knees. I pray and will be praying hard that he remains comfortable, ugh. Been there... My heart is literally bleeding for you and there are tears running down my face.
    The song you sang to him, the words were beautiful. I had a song come into my head the morning before they took Lance to the hospital at 5 a.m. after being up with him all night. It was called "Im calling on an Angel" I have posted it again, but will repost it tonight on the listserve.
    Its such a helpless feeling to watch our kids, and the families that we now call "our family" go thru this tragedy over and over and over again. It never hardens us though..
    Please know all of us in your NB family are praying and crying with you.

    Im sending love, and peace for all of you and most of all "COMFORT" for dear Simon.

    I love you all

    Thursday, July 29, 2004 -- 18:04:53 (EDT)
    Name: Lisa Actor
    Location: Park City, UT
  • Simon, Mary, Markus &amp Miriam,
    Though my sons and I only met you once, we have held you in our thoughts and hearts for months. You were dealt a cruel hand and you have played it with such courage and grace. All of the love in the universe surrounds you now, ours included.
    Lisa (Daniel &amp Charlie, too)

    Thursday, July 29, 2004 -- 17:55:18 (EDT)
    Name: Julie Dybdahl -- Email:
    Location: Ann Arbor, MI USA
  • Dear Mary, Markus, Miriam and Simon,

    I'm holding you very close right now, and sending you all my strength. Peace be with you all.

    Love, Julie

    Thursday, July 29, 2004 -- 17:37:15 (EDT)
    Name: Jacqui Shambaugh -- Email:
    Location: Oakton, VA
  • I've never known another family so full of love and appreciative of the joys of life. I hope remarkable, brave little Simon passes peacefully, and that you'll all take comfort in his freedom from this horrible illness. Thank you for allowing us to know and love Simon over these difficult past years. I'll remember him and be inspired by him - and you all - always.


    Thursday, July 29, 2004 -- 17:28:43 (EDT)
    Name: Kathryn Bartholomew -- Email:
    Location: , Utah USA
  • Dear Mary, Markus, Simon and Miriam,

    I was so pleased to run into Markus and Miriam at the Framery on 15th and 15th the day before yesterday but I couldn’t get online until today. I was privileged to see some of the beautiful sketches of Simon that were being prepared for framing. They are gorgeous.

    For Miriam,
    I am so impressed with how smart and fun and lovely you are at four and “three quarters” years old. Thank you for showing me how well you write your name. And thank you for being so very smart as to instantly learn how to write my name! I wish I could have stayed and talked to you longer. I will email you the pictures you took like I promised when I’m done writing this. You are very, very artistic! I hope to be able to sing with you for church this fall. Love, Kate

    For all of you, especially Captain Underpants Simon (by the way, my Captain Underpants name is Flunky ToiletSquirt), this is a song (a little waltz that you can make into a canon) a friend gave to me when I was having a hard time. It is my wish for you:

    May you go in peace and joy,
    May you be surrounded with love.
    May your days be strong, seasoned with a song.
    May you always go in peace and joy.

    All my love,

    Thursday, July 29, 2004 -- 16:54:35 (EDT)
    Name: Steve Robertson
    Location: St. Paul, MN
  • Dear Simon and Family,
    We think about you frequently and now, especially, we are holding you in our hearts.
    Steve, Meg, Sally and Will

    Thursday, July 29, 2004 -- 16:36:10 (EDT)
    Name: Jonel Browning -- Email:
    Location: Pittsburgh, Pa
  • Mary and family. Please know that we are saying prayers for Simon and the entire family. This disease is just relentless. I hope that Simon is able to be kept comfortable throughout his passage. I am so sorry that nb is going to take yet another precious child. Please know that you are in our thoughts and prayers. Jonel mom to Elijah nb 4 dx 3-14-03 relapsed 6-04

    Thursday, July 29, 2004 -- 16:15:10 (EDT)
    Name: Carla and Jamie -- Email:
    Location: Washington, DC
  • Mary, Markus, Miriam, and Simon -- We visit the site regularly, and we think of you often, but especially now. You are so lucky to have each other close by. all our love -- carla and jamie

    Thursday, July 29, 2004 -- 15:52:38 (EDT)
    Name: Marcie Obstfeld -- Email:
    Location: Irvine, CA USA
  • Thank you for keeping the rest of us up to date on Simon. Please know that we are holding you all close right now and praying for an easy passing for Simon. Love, Marcie, David, Rachel and Noah

    Thursday, July 29, 2004 -- 15:26:07 (EDT)
    Name: Madi, Lexi, Lawrie and Curt
    Location: Seattle,
  • Mary, Markus, Simon, Miriam,

    Thank you for continually helping us to feel connect even from far away.
    Those are lovely words you are singing to Simon. Know that we are now singing, saying, praying those same words with you as we move through our days and nights.

    May the spirit of love and peace gently enfold all of you.
    We love you.

    Madi, Lexi, Lawrie and Curt

    Thursday, July 29, 2004 -- 15:20:10 (EDT)
    Name: Fraser -- Email:
  • Dear Simon, Neah had such fun eating popsicles with you and your sister. We are sending you big sticky popsicle kisses. Fraser and Neah

    Thursday, July 29, 2004 -- 15:04:00 (EDT)
    Name: amy -- Email:
  • Dear Mary, Marcus, Mirium and Simon,
    Please know that you are in the thoughts and prayers of my family during this time. Hoping for a peaceful ending.

    Thursday, July 29, 2004 -- 15:02:16 (EDT)
    Name: Dotty Seiter -- Email:
    Location: S. Hamilton, MA USA
  • I am filled at once with both joy and heartbreak. Joy for the vibrant presence each of you has in my life. Heartbreak thinking of Simon's journey towards leavetaking. I thank you again and again for your faithfulness in sharing yourselves. I visit Simon's place every single day, often more than once.

    With love,

    Thursday, July 29, 2004 -- 14:19:58 (EDT)
    Name: Debbie -- Email:
    Location: Woodbridge, Va. USA
  • Dear Simon, Mary, Markus, and Miriam, I am so sorry to hear about the recent turn of events. You are in my thoughts and prayers for strength and peace. You are all doing such a wonderful job.Your family has so much love. I have been reading your site for months and hoping for the best. Love, Debbie

    Thursday, July 29, 2004 -- 14:12:29 (EDT)
    Name: matt, caroline and hava -- Email:
    Location: Ann Arbor, MI US
  • Dear Mary, Markus, Miriam, and Simon
    Our thoughts and prayers are with you at this difficult time.
    With all our love,
    Matt, Caroline, and Hava

    Thursday, July 29, 2004 -- 14:10:33 (EDT)
    Name: Kristy -- Email:
    Location: Ann Arbor, MI US
  • All my love and prayers for peace and strength are with you, Simon, Mary, Markus, Miriam, Grann, and your entire family.

    Thursday, July 29, 2004 -- 14:07:04 (EDT)
    Name: The Burgers
    Location: ithaca, ny
  • Sending our love and support to all of you.
    xo Liza, Mike, Jolan and Jenna

    Thursday, July 29, 2004 -- 13:09:25 (EDT)
    Name: Anne, Tom, and Johannes -- Email:
    Location: Northfield, MN
  • Dearest Simon, Miriam, Mary, and Markus,

    All our deepest love is with you,

    Anne, Tom, and Johannes

    Thursday, July 29, 2004 -- 13:04:04 (EDT)
    Name: Wolfgang Pammer -- Email:
    Location: Bad Leonfelden, Austria
  • Lieber Simon!
    Liebe Familie Craig-Vodosek!
    Wir sind in Gedanken bei Euch...
    Heide,Erhard, Wolfi &amp Dieter

    Thursday, July 29, 2004 -- 12:39:46 (EDT)
    Name: stephanie saenz
  • simon , mary , markus, miriam,
    my thoughts and prayers are with you

    Thursday, July 29, 2004 -- 12:08:17 (EDT)
    Name: Erik
    Location: Davidsonville, MD
  • I don't know why I chose to check the web mid-day from work today - I've not done that before. ..

    I believe there's a wonderful spirit moving through the legions of people - men and women, young and old - that Simon has touched throughout his all-to-brief life.

    God bless you Simon, Markus, Mary, Miriam -
    Erik and family

    Thursday, July 29, 2004 -- 10:54:12 (EDT)
    Name: charles -- Email:
    Location: ouaga, burkina
  • i day here oooooooooooooooooooo please go to the next thanks

    Thursday, July 29, 2004 -- 00:09:37 (EDT)
    Name: Elizabeth Kent -- Email:
    Location: Oregon House, CA
  • Dear Simon!

    It is so hot here this summer that I have to pour water all over my head just to take a cool enough walk!

    I've been thinking about you a lot. I send you and your wonderful family the very best, coolest (warmest) love.


    Wednesday, July 28, 2004 -- 22:46:44 (EDT)
    Name: Kelly Taggart -- Email:
    Location: Costa Mesa, CA USA
  • Hi Simon, I am John's Dad. He also has Stage 4 NB. Our favorite restaurant is also the Old Spaghetti Factory. We especially like the garlic butter. I really like your great website. When John and I say prayers at night we pray for all our other friends with cancer. Please know that we are now praying for you as well as your family. We are specifically praying for your eyes to feel better. We'll keep checking back at your website.

    Wednesday, July 28, 2004 -- 22:46:44 (EDT)
    Name: Kelly Taggart -- Email:
    Location: Costa Mesa, CA USA
  • Hi Simon, I am John's Dad. He also has Stage 4 NB. Our favorite restaurant is also the Old Spaghetti Factory. We especially like the garlic butter. I really like your great website. When John and I say prayers at night we pray for all our other friends with cancer. Please know that we are now praying for you as well as your family. We are specifically praying for your eyes to feel better. We'll keep checking back at your website.

    Tuesday, July 27, 2004 -- 10:17:47 (EDT)
    Name: Gari Stein
  • Hello, I cannot believe that I have not been in touch for so long. I have been so busy grandmothering that I have not even been on line. I know that I missed some birthdays, as I am so bad in remembering. But I am always thinking about all of you and still enjoy the pictures of Simon and Miriam on my music wall. Do you remember the one of Mary holding a tambourine-whistle in her mouth when Simon was about 15 months old. It is still my favorites. I am on vacation from teaching classes and trying to get busy on my book about the value of music in a young child's life. I know you are always singing and dancing and glad to hear, enjoying some good art experiences. I am sending you all my love and prayers as I do each and every day. Big hugs to you all. Much love always. Gari

    Tuesday, July 27, 2004 -- 08:24:03 (EDT)
    Name: Kay, Kirk, Heather &amp Tyler -- Email:
    Location: Park City, UT
  • Simon &amp Miriam:
    We are sending our love from Park City. We just read about Alex's Lemonade Stand and we will have one in a few weeks! That sounds like fun! Thanks for the idea! And maybe we can come play with Miriam at the park one day soon! Our thoughts and love and positive energy are with all of you! Love, Kay, Kirk, Heather &amp Tyler

    Tuesday, July 27, 2004 -- 02:20:19 (EDT)
    Name: Annette, Steve Rowan
  • Simon and Miriam,

    I forgot to tell you we had a bear in our campground this weekend. We made a mistake and left two of the coolers out and they were right in front of our friends tent. The bear knocked one over and proceeded to first take a stick of butter walk about 10 feet away eat that and then return for the bacon and then a bag of ice. I hear he wasn't too pleased with the ice. While this was happening a coyote came up to try to get some of the spoils and but the bear growled at the coyote and he ran off. Our friends watched all this for about 20 min and then decided they better interupt or we might not have any food left for breakfast. They got out of their tent and began banging on the metal bear box. This woke us all up from a deep sleep about 5:45 a.m just as the sun was coming up. Steve jumped out of the tent in a panic in his underwear to see what was up and Rowan and I peered out of the tent in time to watch the bear casually walk away. It took quite a few bangs by our friend Mike to even get him to take notice. He was medium sized and very gray on his coat with more brown at his feet and face. We think he was a teenage bear up to no good. :) But he sure made for an exciting start to the day. We had enough canadian bacon left to make eggs benedict, another friends specialty. Best breakfast I have ever had on a camping trip. I'm now on the outlook for the special egg poaching pan so I can do it myself sometime. I don't even make eggs benedict at home.

    The moral of the story is don't leave your food out if you want to have two eggs benedict with bacon but hey it's nice to know that human encroachment around lake tahoe hasn't scared all the wildlife away.

    Thought you might like to hear a little adventure :)

    love ya!!!


    Tuesday, July 27, 2004 -- 02:02:10 (EDT)
    Name: annette steve rowan
    Location: Oakland, CA
  • Hey folks,

    Thinking about you, like all the rest of your extended family around the world. Sorry it didn't work for you to attend the conference in Chicago I know that exchange of information can be very powerful but fortunately in these days of the internet you don't have to leave your home to get it. Glad to hear you have Sally around to play with Miriam and Simon. Lucky you. We've been busy, went camping in Tahoe at Fallen Leaf Lake. I think your family would really love it. It's very close to Lake Tahoe but much smaller and a bit warmer. It's encircled by the peaks of Desolation Wilderness, which are very rugged. We had a lot of fun playing in the water in the warm sunny weather. Got our "playing in the lake fix" since we didn't get so much swim time at Crystal due to the unseasonably cold wet weather there. Wish we could have shared it with you.

    Love you all,

    A, S, R.

    By the way Rowan has a big hole in the front of his mouth and it looks pretty funny. We'll send you a photo on your Mom's email so you can have a good laugh.

    Tuesday, July 27, 2004 -- 01:03:55 (EDT)
    Name: Jenn Sharpe -- Email:
    Location: Lyndhurst, OH USA
  • Hey Simon! and family! :-)
    I hope everythings going good, my mom informed me a few days ago that my aunt was coming in to stay with you all for a little while, thats exciting!! i hope your all having fun!
    Everyone has been thinking about you a lot Simon, you're much thought of, prayed for, and loved - never forget that!! We're all rootin' for you! :-D You are such a strong and brave young boy! Your evening outings sound like fun adventures and its so nice to do that with the people who love you so much!!
    --Stay strong and brave! :-D
    We Love You!!
    --The Sharpes (Jennifer, Jill, Lauren and Rick)

    Monday, July 26, 2004 -- 22:23:50 (EDT)
    Name: Aunt Julie
    Location: Toronto,
  • Well Simon, you've started a Pokemon craze at our house. We have been borrowing, renting and buying Pokemon movies since we saw you. I think it helps us to feel close to you. Got to catch 'em all! Love, Aunt Julie (and M and N)

    Monday, July 26, 2004 -- 21:44:12 (EDT)
    Name: Elder Family -- Email:
  • Hi, Simon. Special greetings from Seneca Lake in New York State. We loved seeing your picture at your celebration! Yeah! All our family keeps you in their prayers. We had all 24 together for a party - a nickel for every name your Mom gets to remember! Cheers!

    Monday, July 26, 2004 -- 16:05:24 (EDT)
    Name: Patrick Flynn -- Email:
    Location: Wichita, KS USA
  • Vodosek family,
    We thought a lot about you during the CNCF conference this week. Tell Simon that Maggie the Soft Coated Wheaten terrier has been busy learning how to jet ski. I may have pictures soon.


    Monday, July 26, 2004 -- 10:43:39 (EDT)
    Name: Madi, Lexi, Lawrie and Curt
    Location: Seattle,
  • It is nice to think of you all together with Sally. We love you.

    M,L,L and C

    Sunday, July 25, 2004 -- 15:57:05 (EDT)
    Name: Julie -- Email:
    Location: Indianapolis, IN USA
  • Thinking of you!

    Saturday, July 24, 2004 -- 20:06:02 (EDT)
    Name: Nancy Hoetker -- Email:
    Location: Champaign, IL USA
  • Hi Simon and family,

    Just letting you know again that we think about you every day and keep checking for updates. We wish you and your family lots of peaceful and happy times to treasure as you continue on your journey. All our best, Nancy, Glenn, Andrew and Nicole.

    Saturday, July 24, 2004 -- 16:14:04 (EDT)
    Name: Madi, Lexi, Lawrie and Curt
    Location: Seattle,
  • Simon and family,

    You are in our thoughts and prayers as we move through our days. We picked some blackberries in our back alley yesterday and the girls made a cobbler with our neighbor Bob - we wished we could stop by and share it with you. . . hot out of the oven with a dollup of vanilla ice cream (and maybe watch a movie quietly together).

    We love you,

    M,L,L and C

    Friday, July 23, 2004 -- 12:44:39 (EDT)
    Name: James K. Burk -- Email:
    Location: Wichita, KS USA
  • Simon, I do wish you all the best. Just wish there were more that I could do or say. I will keep you in my prayers.

    Friday, July 23, 2004 -- 12:32:45 (EDT)
    Name: barbara blodgett -- Email:
    Location: new haven, ct usa
  • I am the librarian at my church. I was organizing the books last week and one caught my eye so I stopped to read it: The Next Place. I liked it and thought of sending it to you, and then I read your website and discovered you already have it. So I read it again for myself and it made me feel closer to the people like my dad who have died.

    Like you, I also like games and cards. And through you I have learned more about Pokemon than I would have otherwise. So thanks!

    Here are good wishes and love from New Haven to Salt Lake City . . .

    Friday, July 23, 2004 -- 07:45:31 (EDT)
    Name: frkurt -- Email:
    Location: Bloomington, IN USA
  • Hi Simon:
    I hope you are having a good day today and have a good weekend too. I am thinking about you a lot, and hope that you are feeling better now and will continue to get better.

    Friday, July 23, 2004 -- 07:03:01 (EDT)
    Name: Kris Hopkins -- Email:
    Location: Clinton, NY
  • Hi, Simon!

    We've been thinking about you and your family every day. Yesterday evening I thought about you especially, Simon -- like someone else who visited your message board recently, I went to donate blood ... and as I was resting on the cot, squeezing the heart-shaped ball the nurse gave me, I imagined my little bag of the "red stuff" wending its way through the blood-bank system to somebody *just like you* -- someone brave and strong-of-heart who just happened to be ill and needed some help.

    Thanks for inspiring all of us, every day!

    Much love,
    Kris (and Rob, Emily, Danny, and Laura, too!)

    Friday, July 23, 2004 -- 02:35:48 (EDT)
    Name: Marie
    Location: Zuerich, Zuerich Switzerland
  • Hi Simon! You are a very cool and very cute boy! When I was little, I was actually afraid of clowns! I just want you and your parents to know that I'll be thinking of you and sending lots of sunny, good thoughts your way. More people love you and care about you than you can count! :) Love, Marie

    Thursday, July 22, 2004 -- 17:31:36 (EDT)
    Name: carol.longsworth -- Email:
  • Hello, Simon, I enjoyed seeing the wonderful photos taken at your celebration of life party July 1! The juggler clowns must have been lots of fun. And you were the life of the party! That day must have given you many happy thoughts to tuck under your pillow. Here's a hug to go with them. From Bob and Carol Longsworth in Oberlin

    Thursday, July 22, 2004 -- 11:11:31 (EDT)
    Name: Michael -- Email:
    Location: Baileys Harbor, Wisconsin USA
  • Hey, Simon! You get to wee a clown today? That's GREAT! I love clowns but our cats are so funny sometimes that I think they hide their red noses and big feet just to frustrate us. Love and hugs from Michael, Nancy, Gizmo, Freefall (he falls off the stairs a lot) and Boo, his sister.

    Thursday, July 22, 2004 -- 05:22:33 (EDT)
    Name: Kim Kowalski -- Email:
    Location: Bayonne, New Jersey USA
  • Hi Simon! My name is Kim and I wanted to tell you that you are a very brave boy. I am thinking of you and you are also in my prayers. God Bless You! Love, Kim

    Thursday, July 22, 2004 -- 00:17:27 (EDT)
    Name: Dannille, Tryn and Liam Smith -- Email:
    Location: Ann Arbor, MI
  • Hi Simon. First, we want to tell you that you are very,very special and very, very cool! How many friends you have!! We wanted to send a joke, but didn't have one, so we thought you might like a poem. This is one that was one of my (Dannille) very favorites at about your age. It comes from a very special book called Poems Children Will Sit Still For. Here goes: "It's four o'clock, said the cock. It's still Dark, said the lark. What's that? said the cat. I want to sleep, said the sheep. A bad habit, said the rabbit. Of course, said the horse.
    Let's have a spree, said the bee. But where? said the hare. In the barrow, said the sparrow. I'm too big, said the pig. In the house, said the mouse. But the dog said bow wow--- it's bedtime now.
    --German Nursery Rhyme (translated by Rose )Fyleman

    Wednesday, July 21, 2004 -- 16:41:53 (EDT)
    Name: Maja -- Email:
    Location: Vancouver, BC CANADA
  • Hi Simon! Just a friendly "hi" loaded with
    all my best wishes to you and your family. Take care.

    Wednesday, July 21, 2004 -- 15:05:56 (EDT)
    Name: priscilla -- Email:
    Location: Lebanon, New Hampshire USA
  • Hi Simon, My best to you- keep the Faith and Courage. Best to your family-hang in htere.

    Wednesday, July 21, 2004 -- 15:04:54 (EDT)
    Name: priscilla -- Email:
    Location: Lebanon, New Hampshire USA
  • Hi Simon, My best to you- keep the Faith and Courage. Best to your family-hang in htere.

    Wednesday, July 21, 2004 -- 12:05:56 (EDT)
    Name: Rebecca
    Location: Boise, ID
  • Dear Simon,

    I was just checking your webpage and wanted to send a "howdy" your way from our latest point west. We send our love to all of you.

    Rebecca, Randy, Emma and Schuyler

    Wednesday, July 21, 2004 -- 10:44:23 (EDT)
    Name: Sally
    Location: Seattle,
  • Hi guys! Your days sound peaceful. I hope you have fun with Marcus the Clown. Maybe Markus the Dad can learn some new tricks!

    Sending all our love every day!!!!
    love, Sally (and Jim, Amy, and Sarah)

    Wednesday, July 21, 2004 -- 09:43:45 (EDT)
    Name: Anna Ritter -- Email:
    Location: Aalen, Bad.Wuertt. Germany
  • Dear Simon,
    my name is Anna. I don't know if you remember me. I was Ben's and Gracie' au pair last year. We saw each other several times during that year. I heard from Christie that you're not feeling so good at the moment. Simon, I'm very sorry about this and you can be sure that I'm thinking of you and hoping that you'll do better soon!
    Simon, I always considered you as a tough strong guy when I saw you. That's why I believe that you have the energy to go through this!
    All the best for you,
    greetings from Germany, also to your parents,

    Wednesday, July 21, 2004 -- 09:36:53 (EDT)
    Name: Quentin Smith -- Email:
    Location: Ann Arbor, MI
  • Hi Simon. I am not in Germany, I am at SUUSI. The Southeast UU Summer Institute in Blacksburg, Va. There are 1000 UUs here and we are doing a lot of neat stuff. I am taking a workshop called empowering your voice. La La Laaaa. Any way I went to the worship service last night and they had these chalice lighting words that made me think of you.
    'For all wounded and those radiant with joy, for those caught in tears, laughter and rejoicing. We would stand together in the light of candles, hearths, suns and stars awash in the bright, brave, astonishting light.'

    I hope your day is a good one. I love you. Quentin.

    Wednesday, July 21, 2004 -- 09:32:45 (EDT)
    Name: 1smileycat -- Email:
    Location: , Iowa USA
  • Simon, A good friend of yours told me about your website - What a beautiful website! You and your family are in my thoughts and prayers. You are a charming boy!

    Wednesday, July 21, 2004 -- 08:38:21 (EDT)
    Name: Jennifer Click and Evan and Carolyn Coveney -- Email:
    Location: Falls Church, VA
  • Simon, we are glad to hear you are feeling better and your head does not hurt so much. Carolyn would like to join you for pasta noodles, but Evan just wants to play Bionicles again, like the last time you were in NY. We all hope you have a fun time today with Marcus the Clown.

    Wednesday, July 21, 2004 -- 04:33:04 (EDT)
    Name: Steve H
  • Hi Simon :-) A good friend of yours told us about your cool web-site and I thought I'd check it out and say hi. My thoughts and prayers are with you and your family.

    Tuesday, July 20, 2004 -- 23:56:40 (EDT)
    Name: Kona Jane
    Location: , Amazon
  • Hi Simon,
    I hope you are having a good day today. I like your photographs and your website.


    Kona Jane

    Tuesday, July 20, 2004 -- 22:49:52 (EDT)
    Name: JavaJoe -- Email:
    Location: San Diego, CA USA
  • Simon,

    Salutations from San Diego! Our mutual friend Bensmomma told about a bunch of us about your story &amp I just wanted to wish you all the best. Hang tight guy!


    Tuesday, July 20, 2004 -- 22:00:52 (EDT)
    Name: Ivan -- Email:
    Location: Alexandria, Virginia USA
  • Hi Simon,
    this is Ivan. A friend of your family told us about you and your cool website. Just so you know - my little girl and I will say a very special prayer for you tonight when we go to bed. I told my daughter about trip I just made to Salt Lake and how I thought God must smile down from the beautiful sky and mountains at all the children there. It will make our prayer for your that much more special!
    Love from Ivan and Kaitlyn

    Tuesday, July 20, 2004 -- 20:16:59 (EDT)
    Name: Dennis -- Email:
    Location: Bulls Gap, Tennessee
  • Greetings from Tennessee Simon. You have a great web site and i will visit it again. You and your family are in my prayers and I'll whisper a special little prayer to your Guardian Angel so that he will take extra special care of you.

    Tuesday, July 20, 2004 -- 19:46:28 (EDT)
    Name: Loriann ( aka LA)
    Location: , Pa USA
  • Dear Simon,
    a friend of your told me about your site and I wanted to stop by. I love your picture on the front!
    I wanted you to know that I am going to add your name to my prayers. I BELEIVE that God listens to my prayers, and yours, AND that he answers them. I beleive with all of my heart.
    I will come back to your site and visit again.

    Tuesday, July 20, 2004 -- 13:33:33 (EDT)
    Name: Donna Ainsworth -- Email:
    Location: Ann Arbor, MI
  • Dear Simon,

    I was thinking about you a lot the other day and found myself off to the Red Cross to give blood. At that time I didn't realize it was you that inspired me to do that but later I realized that you were.

    I asked for prayers for you and your family at church on Sunday.

    Donna Ainsworth

    Tuesday, July 20, 2004 -- 11:22:09 (EDT)
    Name: Julia Welch -- Email:
    Location: Houston, TX USA
  • Hi Simon,
    I am thinking about you and sending you lots of good vibes:) I hope you have many fun and relaxing times this week with your mom, dad, and Mariam.

    Monday, July 19, 2004 -- 19:55:00 (EDT)
    Name: Laura Poncin -- Email:
    Location: Gilbert, Az
  • Just wanted to let you know you are in my everyday thoughts. Praying for your family.

    Monday, July 19, 2004 -- 19:03:30 (EDT)
    Name: Marley Loveman-Brown -- Email:
    Location: new york, NY USA
  • Dear Simon, (written by marley with spelling and punctuation help from mom)

    i want to say hello and that i miss you. yesterday, i went to linda's house and climbed the tree in the front yard. i looked at pictures of you and me and maya and miriam and amelia and lena. i missed everybody and i ate crackers. i read a story to linda. i wish one day for you to visit linda and me to visit linda at the same time. what is it like in utah? do you like ducks? we have baby ducks living in our apartment. they poop a lot. it takes a long time to type this, so bye. dear love to simon, dear love to you. marley bell lovemn-brown

    Monday, July 19, 2004 -- 14:19:14 (EDT)
    Name: Jerry, Christie, Ben &amp Gracie -- Email:
    Location: Ann Arbor, MI US
  • Hi Simon and family! We were on vacation to Alaska and were thinking of you because they have big mountains like Utah. We wish we could see you again. We are emailing you a special photo and hope you have some sunny days!

    Monday, July 19, 2004 -- 11:47:29 (EDT)
    Name: Lucy, Ben, Grace and Logan -- Email:
    Location: Baltimore, MD USA
  • Dear Simon, Miriam, Mary and Marcus,
    Our family is back together again after a fun week at camp Yampa and Yamma's. We wanted to tell you that we often think of you all, and wish we were closer so we could see you more often. Grace and Logan have fond memories of playing with Simon and Miriam at Lake Michigan and Crystal. It was so nice to see you all this Spring in Utah, and your lovely home. We just wanted to let you know that we think of you lots, and wish we could be together!
    Lucy, Ben, Grace and Logan

    Monday, July 19, 2004 -- 07:51:12 (EDT)
    Name: Anne, Tom, and Johannes -- Email:
    Location: Northfield, MN USA
  • Hi Simon and Miriam and Markus and Mary,

    I was thinking about Pokemon today, and all the fun ways you can re-pronounce it: Poke a man, poke'em on, poke a moon, pokey moon, and of course, Pa, come on! There must be more......

    We love you to the bursting point, all of you brave, sweet, beautiful souls out there in the mountainous lands. Nose hugs all around,

    Anne, Tom and Johannes

    Sunday, July 18, 2004 -- 22:02:05 (EDT)
    Name: Susan Hartman
    Location: Ann Arbor,
  • I know there were many prayers for Simon and all of you this weekend. In the two services I attended--Beth Israel on Saturday and Friends Meeting on Sunday--prayers were offered. You are all in our hearts.

    Sunday, July 18, 2004 -- 20:50:00 (EDT)
    Name: amy -- Email:
    Location: ann arbor, mi
  • Dear Simon and Miriam, Mary and Markus:

    Did you feel a love attack coming from Oberlin today? I called your grandparents last night because I was spending the night in Oberlin to drop my son at camp today. Even though we had never met, they had us over for lunch and it was fun to see the house where Mary grew up and where Simon and Miriam played. Your grandpa had some fun toys to help distract my son from his nervousness about being left for three weeks to sleep in a college dorm, and I think it worked! The camp registration was in the beautiful new Science building where I correctly surmised that Craig hall was named after your granddad! Your family is a very special one and all of your webfans feel part of it! Here's a joke from Jesse:

    Q. What time is it when seven hungry lions are chasing you?

    A. Seven after one.

    Thinking of you, hoping tomorrow is pain free with moments of joy and hours of love.

    Sunday, July 18, 2004 -- 20:17:55 (EDT)
    Name: Grandma Sweet -- Email:
    Location: Ashland, OH U.S.A.
  • Markus, Mary,Miriam, Special Simon, all of you have and will continue to be in our prayers and thoughs. It was very special to have met your family. I have no magic worda for you, i wish i did, but we care deeply for you.
    Sweet Hugs From The Sweets &amp xxxxxooooo

    Sunday, July 18, 2004 -- 15:50:08 (EDT)
    Name: Annette Steve Rowan
    Location: Oakland, CA
  • Simon &amp Miriam,

    The Williams kids all had a great week at Camp Yamma Yampa. Lots of swimming, sliding on the water slide, arts and crafts and fun with cousins. All the adults off on their own had fun too. Steve and I and Grace and Logan 's parents Lucy and Ben
    spent a week sailing on the Chesapeake Bay. It's so fun to lie on the trapeaze at the front of the boat as it sailed along with the water sliping along underneath. We all thought about you a lot these past two weeks as we were togheter as a Williams clan. You mean so much to all of us and we so would like to be able to take away your pain and make your tummy want to eat everything with gusto. Hope you got the photo of our ski time together in Utah to put on your wall. We'll send another photo of many of your second cousins soon. Love and kisses, AS&ampR

    Sunday, July 18, 2004 -- 09:39:46 (EDT)
    Name: Julie Lautens
    Location: Toronto,
  • We have such wonderful memories of our visit with you. The kids bought Pokemon 5 after enjoying our video night together. When we watched the movie, we wished we were all watching it together. Hi to Miriam. Love, Julie, Margot and Nathan

    Sunday, July 18, 2004 -- 00:24:10 (EDT)
    Name: Jeevan Simon -- Email:
    Location: , Virginia USA
  • Hello Simon!
    As I was cruising the web to find Opsoclonus-Myoclonus syndrome web sites, I came across your web site. My daughter Rachel was diagnosed with NB at the age of 15 months. Her canacer was classified as Stage1. Her tumor(in the kidney area) was removed and she didn't need any chemo. It's nice to see you enjoying life. Good luck to you.

    Jeevan Simon

    Saturday, July 17, 2004 -- 09:49:36 (EDT)
    Name: Barbara Cobb -- Email: bcobb2989@!
    Location: Loganville , Ga USA
  • My heart goes out to you, I continue to pray for Simon everyday for a pain-free day. What a handsome young man he is.

    Friday, July 16, 2004 -- 14:49:11 (EDT)
    Name: Heinz the Street and Roof Cat -- Email:
  • Hi! Ich habe sie gefunden! Eine Wintergeschichte für Menschen, die mitten im heißen Sommer sind!
    Eine Geschichte für Kinder - aber auch für Erwachsene ..........
    Deine Mum muss Sie Dir bitte übersetzen!

    Das Märchen vom kleinen Herrn Moritz, der eine Glatze kriegte (Wolf Biermann)

    Es war einmal ein kleiner älterer Herr, der hieß Herr Moritz und hatte sehr große Schuhe und einen schwarzen Mantel, dazu einen langen, schwarzen Regenschirmstock, und damit ging er oft spazieren.
    Als nun der lange Winter kam, der längste Winter auf der Welt in Berlin, da wurden die Menschen allmählich böse.
    Die Autofahrer schimpften, weil die Straßen so glatt waren, dass die Autos ausrutschten. Die Verkehrspolizisten schimpften, weil sie immer auf der kalten Straße rumstehen mussten. Die Verkäuferinnen schimpften, weil ihre Verkaufsläden so kalt waren. Die Männer von der Müllabfuhr schimpften, weil der Schnee gar nicht alle wurde. Der Milchmann schimpfte, weil ihm die Milch in den Milchkannen zu Eis gefror. Die Kinder schimpften, weil ihnen die Ohren ganz rot gefroren waren, und die Hunde bellten vor Wut über die Kälte schon gar nicht mehr, sondern zitterten nur noch und klapperten mit den Zähnen vor Kälte, und das sah auch sehr böse aus.
    An einem solchen kalten Schneetag ging Herr Moritz mit seinem blauen Hut spazieren, und er dachte: "Wie böse die Menschen alle sind, es wird höchste Zeit, dass wieder Sommer wird und Blumen wachsen."
    Und als er so durch die schimpfenden Leute in der Markthalle ging, wuchsen ganz schnell und ganz viele Krokusse, Tulpen und Maiglöckchen und Rosen und Nelken, auch Löwenzahn und Margeriten auf seinem Kopf. Er merkte es aber erst gar nicht, und dabei war schon längst sein Hut vom Kopf hochgegangen, weil die Blumen immer mehr wurden und auch immer länger.
    Da blieb vor ihm eine Frau stehen und sagte: "Oh, Ihnen wachsen aber schöne Blumen auf dem Kopf."
    "Mir Blumen auf dem Kopf!", sagte Herr Moritz, "so was gibt es gar nicht!"
    "Doch! Schauen Sie hier in das Schaufenster, Sie können sich darin spiegeln. Darf ich eine Blume abpflücken?"
    Und Herr Moritz sah im Schaufensterspiegelbild, dass wirklich Blumen auf seinem Kopf wuchsen, bunte und große, vielerlei Art, und er sagte: "Aber bitte, wenn Sie eine wollen ...."
    "Ich möchte gerne eine kleine Rose", sagte die Frau und pflückte sich eine.
    "Und ich eine Nelke für meinen Bruder", sagte ein kleines Mädchen, und Herr Moritz bückte sich, damit das Mädchen ihm auf den Kopf langen konnte. Er brauchte sich aber nicht so sehr tief bücken, denn er war etwas kleiner als andere Männer. Und viele Leute kamen und brachen sich Blumen vom Kopf des kleinen Herrn Moritz, und es tat ihm nicht weh, und die Blumen wuchsen immer gleich nach, und es kribbelte so schön am Kopf, als ob ihn jemand freundlich streichelte, und Herr Moritz war froh, dass er den Leuten mitten im kalten Winter Blumen geben konnte. Immer mehr Menschen kamen zusammen und lachten und wunderten sich und brachen sich Blumen vom Kopf des kleinen Herrn Moritz, und keiner, der eine Blume erwischt hatte, sagte an diesem Tag noch ein böses Wort.
    Aber da kam auf einmal auch der Polizist Max Kunkel. Max Kunkel war schon seit zehn Jahren in der Markthalle als Markthallenpolizist tätig, aber so was hatte er noch nicht gesehn! Mann mit Blumen auf dem Kopf! Er drängelte sich durch die vielen lauten Menschen, und als er vor dem kleinen Herrn Moritz stand, schrie er: "Wo gibt's denn so was! Blumen auf dem Kopf, mein Herr! Zeigen Sie doch mal bitte sofort ihren Personalausweis!"
    Und der kleine Herr Moritz suchte und sagte verzweifelt: "Ich habe ihn doch immer bei mir gehabt, ich hab ihn doch in der Tasche gehabt!"
    Und je mehr er suchte, um so mehr verschwanden die Blumen auf seinem Kopf. "Aha", sagte der Polizist Max Kunkel, "Blumen auf dem Kopf haben Sie, aber keinen Ausweis in der Tasche!"
    Und Herr Moritz suchte immer ängstlicher seinen Ausweis und war ganz rot vor Verlegenheit, und je mehr er suchte - auch im Jackenfutter -, um so mehr schrumpften die Blumen zusammen, und der Hut ging allmählich wieder runter auf den Kopf! In seiner Verzweiflung nahm Herr Moritz seinen Hut ab, und siehe da, unter dem Hut lag in der abgegriffenen Gummihülle der Personalausweis. Aber was noch? Die Haare waren alle weg! Kein Haar mehr auf dem Kopf hatte der kleine Herr Moritz. Er strich sich verlegen über den kahlen Kopf und setzte dann schnell den Hut drauf. "Na, da ist ja der Ausweis", sagte der Polizist Max Kunkel freundlich, "und Blumen haben Sie ja wohl auch nicht mehr auf dem Kopf, wie?"
    "Nein ....", sagte Herr Moritz und steckte schnell seinen Ausweis ein und lief, so schnell man auf den glatten Straßen laufen konnte, nach Hause. Dort stand er lange vor dem Spiegel und sagte zu sich: "Jetzt hast du eine Glatze, Herr Moritz!"

    Have a nice time alltogether!
    Heinz the Street an Roof Cat

    Friday, July 16, 2004 -- 14:38:43 (EDT)
    Name: Heinz the Street and Roof Cat -- Email:
  • Lieber Simon, liebe Mary, Miriam und Markus!
    Es dauert immer ein Tage, bis ich wieder mal bei Euch hineinschauen kann in die Homepage. Heute habe ich aufmerksam die neuesten Nachrichten gelesen.
    Der liebe Gott möge Dich beschützen, Simon!
    Wenn ich noch eine schöne Geschichte finde für Dich, werde ich Sie heute noch in Deinen Message-Kasten hinein kopieren.
    So long! And a lot of greetings!

    Heinz the Street and Roof Cat from Oelbronn in Germany

    Friday, July 16, 2004 -- 12:53:59 (EDT)
    Name: Claire Weiner -- Email:
  • Dear Mary and Markus,
    I visit Simon's Place often. Hard to beleive that a year has passed since you left Ann Arbor. I think of you and your family often. Simon is in my prayers. Claire

    Friday, July 16, 2004 -- 03:33:04 (EDT)
    Name: erik andrews -- Email:
    Location: Davidsonville, MD
  • Hi Simon -

    A Ha-Ha for you-

    Do you know why it is so hard to give the Hokey-Pokey man a bath?

    Because when you put his left foot in, he takes his right foot out!

    Have a great day!

    Friday, July 16, 2004 -- 01:29:58 (EDT)
    Name: Diane and Sophia -- Email:
    Location: Quincy, MA USA
  • Hi Muriam,
    We met at the RMH in NYC. We strolled together to MSKCC on several occasions last summer. I am sorry I was not aware of Simon's condition. I must confess that I have been selective with my reading of the NBLAST posts. I pray that Simon finds comfort as well as your family. I have thought of you from time to time and wondered how you and other families I have met in NYC were doing. I will pray for you and your family during this time of sorrow. Take care. Diane

    Thursday, July 15, 2004 -- 17:14:12 (EDT)
    Name: Liz, Mike, Emma, and Lucas -- Email:
    Location: Ann Arbor, MI
  • Hi Simon, Miriam, Mary, and Marcus,

    We *still* miss seeing your smiling faces around here! And we're so grateful to have this website which keeps us up to date.

    Did I tell you I started a pet-sitting business? It has been very exciting, meeting all these people and their wonderful pets! Along with the expected dogs and cats, I've also been taking care of leopard frogs! They are so cool- bright green and spotty. When they see me coming toward their tank they get very active, positioning themselves to pounce on the mealworms I lower to them one at a time. And guess what?! They really DO play leap frog!!
    My dog and cats are always very interested to smell where I've been when I return home. I even have a (still tiny) web page:

    We think of you all every day, and of the strong and loving example you set for us all.

    Thursday, July 15, 2004 -- 15:21:56 (EDT)
    Name: Karen Zaruba, Mark &amp Kirk Meier -- Email:
    Location: Ann Arbor, MI
  • Hi Simon! We were closer to you than usual last week when Kirk and Karen went to Nebraska to visit family. I'll bet you know where Nebraska is.

    We took some of Kirk's Bionicles with us. Have you taken any bionicles with you when you went to New York or anywhere else? They're good at flying although they don't like to wear their seat belts on the plane!

    Thursday, July 15, 2004 -- 13:27:33 (EDT)
    Name: carol longsworth -- Email:
    Location: Oberlin,
  • Simon and family, Bob and I are thinking of you and admiring how brave you are and how oving! We enjoyed Mary's report about your saying your parents were perfect, and then Mary saying YOU were perfect. We agree that you and your parents definitely are all perfect, and we send you our love. Carol and Bob

    Thursday, July 15, 2004 -- 08:31:48 (EDT)
    Name: Alex Black -- Email:
    Location: Ann Arbor, MI USA
  • hey simon whats goin on? in the past year i have fallen in love with a beautiful girl, doni curkendall, you may know her because she has posted on your site. You may be wondering why i am telling you this...So one day at work i had nothing to do... so i went on google and typed in donis name. One site came up with donis name on it. And it was your site. I have learned about your very touching story. Now she posted here almost 2 years ago but she is the reason i have discoverd you. I just want you to know that there are people/ strangers (me) that really care. I dont know your personally but if u ever need a friend to talk to feel free to e-mail me. till next time simon take care

    Thursday, July 15, 2004 -- 01:02:11 (EDT)
    Name: Miss Rachel -- Email:
    Location: Salt Lake City, Utah
  • Hi Simon, Hi Miriam, Mary and Marcus

    We are all thinking of you and sending all of our love.
    Here's a couple of jokes to add to your long list.

    What kind of teeth can you buy for a dollar?

    Buck teeth.

    The three little pigs decide to go to a restaurant to eat breakfast.
    The first little pig orders pancakes, the second little pig orders waffles, and the third little pig orders water

    For lunch, the first little pig orders a sandwich, the second little pig orders a salad and the third little pig orders water.

    Dinner comes and the first little pig orders chicken, the second little pig orders steak, and the third little pig orders water.

    The server finally gets frustrated and asks the third little pig.."Why are you only ordering water?"

    The third little pig answers
    "Well, because I'm the little pig that as to go Wee wee wee all the way home."

    We love you!
    Miss Judy, Miss Barb, Miss Tad, Miss Julie, Miss Misha, Miss Rachel and everybody else from Fine Arts preschool and the studio.

    Thursday, July 15, 2004 -- 01:01:27 (EDT)
    Name: Andrews Family -- Email:
    Location: Davidsonville, MD
  • Hi Simon and family -

    Read about your craving for some raspberries last evening. They are indeed my most favorite berry as well.

    I'm in New York (1000 Islands area) right now with my family, and my mom brought lots of raspberries and raspberry jam from Oberlin when she came to visit. I think of you and your family when we eat the jam on toast and sandwiches and ice cream (and just by the spoonful sometimes!)

    Sorry to hear of your sick tummy and sometimes sore spots on your jaw. Many prayers continue to flood your direction.

    Erik &amp Michele &amp Sarah &amp Erickson
    Geoff &amp Cindy &amp Michael &amp Rachael
    Chris &amp Katie &amp Abby &amp Georgie &amp Izzy
    George &amp Pete &amp Elise
    (and other Andrews-es too numerous to mention...)

    Wednesday, July 14, 2004 -- 17:42:17 (EDT)
    Name: Emily Shambaugh -- Email:
    Location: Oakton, VA
  • Mom and I were looking at your party pictures - it looked like fun! She found some silly jokes for you:

    What did Noah say as he was loading
    the Ark? "Now I herd everything!"

    What animal did Noah not trust? The

    Why couldn't they play cards on the
    ark? Noah was sitting on the deck!

    I'm really sorry you're sick. We're thinking about you!

    Emily (and Jacqui) Shambaugh

    Wednesday, July 14, 2004 -- 16:49:55 (EDT)
    Name: Kathryn Dybdahl -- Email:
    Location: Ann Arbor, Michigan USA
  • Dear Simon,
    You were my friend when you lived in Ann Arbor. I'm sorry you're sick. I wish you could get better. I love you.

    Love, Kathryn Dybdahl

    Wednesday, July 14, 2004 -- 16:25:02 (EDT)
    Name: Lawrie and Curt
    Location: Chinocoteague Island, VA
  • Hi Simon, Miriam, Mary and Markus,

    Curt and I are at the teeny, tinest public library we have ever seen here on the eastern shore. We just looked at your pictures again from your celebration of life party with Marcus the clown. WE LOVE how each one of you are cracking up with all-over-body-laughter in that first picture.

    At the beach yesterday we saw at least 10 porpoises (sp?) off the shore and quite a few big, brown pelicans-- we don't ever see either of those in Seattle.

    We are holding all of you in our thoughts and prayers daily. Madi and Lexi are at Camp Yampa Yamma right now but, we know they are sending you their love too!

    love, Lawrie and Curt

    Tuesday, July 13, 2004 -- 21:18:16 (EDT)
    Name: Connie Lippert -- Email:
    Location: Ann Arbor, Michigan US
  • Sorry to Miriam and Marcus for misspelling your names in my last message! Must have had a brain burp!
    Your Friend, Connie Lippert

    Tuesday, July 13, 2004 -- 21:15:43 (EDT)
    Name: Connie Lippert -- Email:
    Location: Ann Arbor, Michigan US
  • Hi Simon, Mary, Muriel and Marcus,
    We sent our picture on Saturday so hope you get it soon. Checking out the site for updates and hoping you're having a good day. We think of all of you every day and are praying for good times and lots of love for you all.
    Your friends,
    The Lipperts in Ann Arbor

    Tuesday, July 13, 2004 -- 18:50:38 (EDT)
    Name: Laz Slomovits -- Email:
    Location: Ann Arbor, MI USA
  • Dear Simon, Miriam, Mary and Markus,

    Thinking of all of you with love and sending all blessings and best wishes,


    Tuesday, July 13, 2004 -- 15:25:53 (EDT)
    Name: Lee Wood -- Email:
    Location: Oberlin, Ohio USA
  • Dear Simon. Please know that your Oberlin friends are all praying for you. We send you and your family many hugs. You are a brave boy and we just think of you so much. A hug to your sister and all of your helpers. Lee Wood, First Church in Oberlin and dear friend of your Grandma and Grandpa Craig.

    Tuesday, July 13, 2004 -- 13:40:25 (EDT)
    Name: Anne-Sophie
  • Hi Simon,

    I thought you would enjoy watching live video of elephants in "The Elephant Sanctuary"

    Here is the url:

    and click on the elecam

    Monday, July 12, 2004 -- 22:05:19 (EDT)
    Name: Rachael Coleman -- Email:
    Location: SLC, UT
  • (((((Simon)))))
    ((( ))) is a cyber hug by the way. Consider yourself hugged! I've got a book to drop off at your house. I got it at the Sugarhouse Street Arts Festival last weekend. It's called "I Am A Superhero!" and was written &amp illustrated by a young boy from Salt Lake when he was fighting his own cancer battle. His friends and family were raising money and awareness for pediatric cancer research. I told them about you as well as Alex and her lemonade stand. We exchanged web sites and they offered me a copy of Daxton's book to give to you. If you're not around tomorrow when I get out of work I'll just leave it on your porch. I've got a small gift for the cats too. Maggie and I made a catnip toy for Sam and Simon.

    (((Mary, Markus, Miriam &amp Simon))) I learn so much from you every day. You continue to be my real-life heroes!

    <wiping a tear>

    Much love, Rachael &amp family

    Monday, July 12, 2004 -- 22:02:28 (EDT)
    Name: Jane Bishop -- Email:
    Location: Ann Arbor,
  • Hi Simon, and everyone else at your house! I just looked at your pictures of the party and had to laugh along with you all...that clown must have been really funny. I have never had a clown perform just for me! I am at my cottage on Lake Huron, and I do have some clowns in the pine trees....4 young sharp-shinned hawks who keep whistling for food and flopping from tree to tree. I think their parents are probably waiting for the time when they learn to be quiet!! They are really funny to watch. Wish you could see them, and also swim in Lake Huron. I'm thinking of you every day, and hoping for fun times with your family and friends.

    Love to all, Jane

    Monday, July 12, 2004 -- 21:46:19 (EDT)
    Name: Kris Hopkins -- Email:
    Location: Clinton, NY
  • Hi, Simon! Danny has a Pokemon joke for you and Miriam (yes, your parents can try to guess the answer, too!):

    Q: What did the electric Pokemon say when he sneezed?

    A. Pik-a-CHOO! ;-)


    We are so inspired -- as we have been since we first visited this site over two years ago -- by your family's ability to be "in the moment" and to live each day to the fullest. We continue to learn more from your example and spirit than we can possibly put into words. Thank you for the many gifts you share with us through this site.

    We took some photos tonight and will try to send them to your e-mail address. See if you can guess what we were thinking when we took the pictures! (I just hope they came out OK -- our resident family photographer was at a barbershop rehearsal tonight, so please pardon any glowing red eyes or fuzzy facial features that may show up in the final product, says Kris! ;-)

    Lots of love from us all -- Kris, Rob, Emily, Danny, and Laura

    Monday, July 12, 2004 -- 21:05:06 (EDT)
    Name: Debbie Hume -- Email:
    Location: San Luis Obispo, CA USA
  • Hello there SIMON!
    Buddy, you may not know us but we pray for you everyday and have been for some time. We think of you often and look forward to meeting you one day.
    We are here for you. If you need or want anything we will do our best to get it. We hope and pray for more happy, playing days.
    With love, Thom, Debbie and Matt Hume

    Monday, July 12, 2004 -- 20:56:01 (EDT)
    Name: Deborah Gurt -- Email:
    Location: Northfield, MN USA
  • Hi there Simon, We've been thinking about you a lot lately and just wanted to send our hellos. We're working on a picture to send but we're still using film (not this newfangled digital stuff) so its taking a little time.
    In case you are looking for a silly movie to watch with your family, we recommend "The Shaggy D.A." Lev thought it was hilarious.
    Say hi to mom, dad, and Miriam from us. We love you and think of you a lot.
    from Deborah, Marek, Lev, Jacob, and ?

    Monday, July 12, 2004 -- 20:51:18 (EDT)
    Name: Michael Farmer -- Email:
    Location: Baileys Harbor, Wisc. 54202 USA
  • Hey,Simon! You got lots of friends, eh? I'm sending a card or two or three so watch for them. Hugs to you and your mom and dad.

    Monday, July 12, 2004 -- 18:51:50 (EDT)
    Name: Marta, Paul &amp Sam -- Email:
    Location: Ann Arbor,
  • Dear all,

    It was lovely to read about your outing "une famille". Mary's observation, that the task is to is to "enable these wonderful moments to happen and to live them fully", is good always, for all of us, and pretty well characterizes how, it seems to us, you'all have been doing it for some time! Wishing sweetness and joy and peace to each of you, brave hearts one and all.

    Marta, Paul, Sam

    Monday, July 12, 2004 -- 15:07:09 (EDT)
    Name: allyson -- Email:
    Location: London, England
  • Simon!
    A massive love attack from "across the pond". Happy to hear about you doing a Blockbuster run and a rasberry search! My son Martin (age 6)said to tell you that it is rainy and cold and not summer at all over here and to please send the sun over here!
    Big love to you, mum, dad and Miriam.
    Allyson and the Concagh tribe.

    Monday, July 12, 2004 -- 13:03:48 (EDT)
    Name: Sally and Amy Olson
    Location: Seattle, WA
  • I am so glad you had nice family time last night. It was good to talk with Mary yesterday. We send you all our love and hopes for more special family times.
    Amy wrote a poem today. We thought we'd share it with you:
    The View
    There is a view above my house
    And it is beautiful.
    It's a view with trees and seas
    Above my house in the deep blue seas.
    The End.

    much love, Sally and Amy

    Monday, July 12, 2004 -- 07:13:39 (EDT)
    Name: Anne, Tom, and Johannes -- Email:
    Location: Northfield, MN USA
  • Hi there Simon and Miriam and Mary and Markus,

    We are all sending every little smidgen of love we can find around the house, I found some birds to fly it over to you, so keep a watch out, but be careful it doesn't fall on your head, it's an awful lot!

    We're so sorry about your tummy hurting and feeling yucky. Those rasberries sure do sound good, they're my favorite berry, too. I love 'em on everything, by themselves, and in jam, and on ice cream, and in smoothies. Johannes doesn't like them yet, can you believe that? He's a bit scared of any food that doesn't resemble bread or cereal.

    Congratulations on your anniversary in SLC!
    anne (and Tom and Johannes)

    Monday, July 12, 2004 -- 06:06:57 (EDT)
    Name: Jane -- Email:
    Location: Ann Arbor, Michigan USA
  • Hi Simon, Miriam, Mary and Markus-- when I just said you names out loud as I was typing them, they sounded like a song-- we have been listening to your songs of life on this message board and on this website for several years. THey are such a gift to all of us. Simon, I hope today has some perky spots and some fun. I love rasberries too-- they have so much taste for such little berries and they are so delicate and soft. If you rub a rasberry (a funny thought), it feels a little bit like the softness of a puppy's tummy. We are sending you love vibes from Ann Arbor. Love, Jane, Lance, Emily,Cara and Karl

    Monday, July 12, 2004 -- 02:24:17 (EDT)
    Name: Antonis
    Location: Philadelphia , PA
  • I have a son who just finished the first grade like you Simon. I hope one day I will be able to explain to him how much I appreciate you and you family, and why.

    You are a great inspiration to all of us. Thank you.

    Sunday, July 11, 2004 -- 22:49:58 (EDT)
    Name: Bruce Gebhardt -- Email:
    Location: Philadelphia, Pennsylvania U.S.A.
  • You're a really great, brave kid, Simon. It was great to read about you.

    A guy named Sid told me about you.

    I'm from a couple thousand miles east of you, in Philadelphia. It's hot here too, and "humid"--the air is moist like a jungle.

    I write articles for magazines. I study fish and butterflies and plants, and raise vegetables in my garden. I tried to grow raspberries too, but the catbirds ate them!

    Best of luck to you.

    Bruce Gebhardt

    Sunday, July 11, 2004 -- 19:47:24 (EDT)
    Name: Elizabeth Kent -- Email:
    Location: Oregon House, CA
  • Dear Simon,

    The best is yet to come! What an amazing journey you are on.

    I send oceans of love to you, your mom and dad and Miriam.

    I just heard from Blanaid who also sends her love. She met your folks when they met eachother and we all met eachother in order for us to give our love to you! Amazing.

    With love,


    Sunday, July 11, 2004 -- 19:21:23 (EDT)
    Name: Tom -- Email:
    Location: , California USA
  • I am an Internist and Simon's story was brought to my attention by a fellow Pentracer (Pentrace). I wanted to tell Simon to keep up the spirits. Although I do not practice Pediatrics, I do deal with adults with terminal illness. Your courage will not be forgotten. You are in my prayers.

    Sunday, July 11, 2004 -- 19:13:43 (EDT)
    Name: Kelly Rendall -- Email:
    Location: Teignmouth, Devon United Kingdom
  • Just popped in to read Simon's progress, and noticed how lonh his protocol is! Jamie, our son, aged 4 also has Neuroblastoma, stage 4, and his protocol is shorter, he has just had a break for his kidney function to return before retinoic acid, and we don't have MIBG therapy, or immuno therapy here yet.
    I thought it was a lovelly idea to have a Celebration of Life party, and will keep the idea to use, if we are ever in your boat.
    I wish Simon more fun, and less pain, on his journey, he is so brave

    Saturday, July 10, 2004 -- 17:08:42 (EDT)
    Name: David Craig -- Email:
    Location: Indpls, IN
  • Dear Simon,

    Talking last night with Grann and Granddad, I was glad to hear about your early evening exploits--Shrek, corn on the cob, and whooping everyone around in Pokemon. Sounds fun! Thinking about you. Love, David

    Friday, July 09, 2004 -- 22:21:14 (EDT)
    Name: the crew at Camp Yampa Yamma
    Location: Baltimore,
  • Hi Simon, Miriam, Mary and Markus,

    As we gather here at Camp Yampa Yamma together we are holding you in our thoughts, prayers and playtime. You all are in our hearts and on our minds each day. Know that we love you and are with you in spirit.

    Williams clan

    Friday, July 09, 2004 -- 20:07:15 (EDT)
    Name: Bonnie -- Email:
    Location: Traverse City, MI
  • Hey Everyone. We're among the many frequent visitors to your site and think of you often. Kyleigh keeps us pretty busy these days - a very active 6 month old! Turns out we're moving back to Ann Arbor next month and I'm so sad you all are no longer there! Miss you all and you're never far from our thoughts and always in our prayers. Lots of hugs and kisses to all.

    Friday, July 09, 2004 -- 17:35:28 (EDT)
    Location: SALT LAKE CITY, UT

    Friday, July 09, 2004 -- 17:33:24 (EDT)
    Location: SALT LAKE CITY, UT

    Friday, July 09, 2004 -- 17:11:51 (EDT)
    Name: Amber -- Email:
    Location: , Europe
  • Hi Simon! I've been traveling around Europe since May, but I check your web site all the time. Today I went to see the statue of Peter Pan in Kensington Gardens, London. I remember when you, Miriam, your mom, your dad, Mark, and I all went to see the second Peter Pan movie in Ann Arbor. You and Miriam were really little then! Love always, Amber

    Friday, July 09, 2004 -- 17:08:47 (EDT)
    Name: Amber -- Email:
    Location: , Europe
  • Hi Simon! I have been traveling around Europe since May, but I check how you're doing all the time! Today I visited the statue of Peter Pan in Kensington Gardens, London. I remember when your mom, dad, Miriam, you, Mark, and I all went to see the second Peter Pan movie in Ann Arbor. You and Miriam were really little then! Love always, Amber

    Friday, July 09, 2004 -- 15:16:28 (EDT)
    Name: Jonel Browning -- Email:
    Location: Pittsburgh, Pa USA
  • Simon and Family Just wanted you all to know that we are thinking about you all and sending many many prayers your way. Mary I remember from the NB listserv you saying that you do massage therapy for Simon. I am very interested in the ifant massage. Elijah has found much comfort and relief in the little bit I do know about massage. Hang in there. Please let us know how the potrait turns out. Hope and Prayers Jonel mom to ELijah dx nb 4 3-14-03 relapsed June 04

    Friday, July 09, 2004 -- 14:26:48 (EDT)
    Name: Mary -- Email:
    Location: Pauls Valley, OK US
  • Hello to all!
    I wish you the best. I noticed in your notes that Simon received glyconutrients in 2002. There is an article I read about a famous neurosurgeon, Dr. Benjamin Solomon Carson, Sr., at Johns Hopkins, that also took glyconutrients for prostate cancer, and apparently recovered. I was wondering what your experience was and if you have continued thes with Simon?

    Thursday, July 08, 2004 -- 22:21:56 (EDT)
    Name: amy -- Email:
    Location: ann arbor, mi
  • Dear Simon and Miriam, Mary and Markus:

    We delighted in seeing the start of the photo board and feel like we're part of a very special community of people keeping you in our prayers. In fact, we're really thinking of you daily because we're getting ready to take our eldest son Zac for 3 weeks of camp at Oberlin College where he'll live in a dorm even tho he's only 11. He's a little nervous about going away but since I now have a sense of how great people are in Oberlin, I'll know that he'll be in a place filled with loving, caring folks.

    My mother is just starting to lose her hair from chemo that she started last week. The way your family has faced simon's disease has given us alot of courage and inspiration going forward in our family. Please know how much your shared story means to all of us.

    Wednesday, July 07, 2004 -- 10:14:28 (EDT)
    Name: Kristy Hanson -- Email:
    Location: Ann Arbor, MI US
  • Hi Simon! I just wanted to send your greetings not only from me but from all of us at Arts at Michigan--the place where your mommy used to work.

    I love to visit your website and look at your photos. The photos of your recent party really made me smile, and wish I could have been there, too! It's so great to see you and your whole family laughing.

    I sure hope your tummy is doing better, and I really hope that you and your family know how much love we're sending from Ann Arbor. We think about you lots!!!

    Wednesday, July 07, 2004 -- 00:03:27 (EDT)
    Name: Kris Hopkins -- Email:
    Location: Clinton, NY
  • Very sorry to hear about your tummy troubles, buddy. I know that can be a pain -- literally! While I was traveling on and off in May and June I had trouble managing my own brand of tummy troubles and had to take some medicine, too -- I hope your Zantac helped you as much as my Aciphex helped me! Being able to moderate or manage our pain can sure put us in a better mood, can't it? And that nausea thing is no fun either, is it. But I'm glad you decided to take the Zofran, Simon -- I had to take that after some surgery I had last year, and, as I hope you found, too, it made a BIG difference. Anyway, I hope it tasted OK to you or that you had a really yummy flavor of jello to take it with -- just like Mary Poppins, you guys are very creative about figuring out good ways to make the medicine go down! :-)

    I love all the photos you're getting from all your fans around the world, Simon! We'll try to take a family photo to let you know that we, too, are thinking about your whole (extended) family and wishing you much joy in the company of friends and relatives, much peace in your hearts and minds, and sufficiently effective medicines to help ease the pain whenever it makes its unwelcome appearance.

    I hope each of you can feel -- gently enveloping you -- all the warm, caring thoughts that are wafting toward you, each and every day, from all across the globe.

    As so many others are, too, we're thinking about you a whole lot.

    Love, Kris et al.

    Tuesday, July 06, 2004 -- 17:48:44 (EDT)
    Name: Deborah -- Email:
    Location: Ann Arbor, MI USA
  • hi simon. : )
    thanks for posting those great pictures on your website. i don't like clowns very much but looking at your party made me wish i had been there. i think you're changing my mind about clowns, simon!

    a couple of weeks ago my son brandon got a bunny. he calls him bunny. bunny is the softest animal we have ever felt. have you ever petted a bunny? this is the second bunny we have had and both of them have been very smart. one even knew how to stack "stacking cups" inside on another! now that's a smart bunny!

    have a wonderful week. the weather here in ann arbor is warm and sunny with not too many bugs. i hope the weather in salt lake city is even better.

    many hugs and kisses and much love from your friends in ann arbor and at the university of michigan.


    Tuesday, July 06, 2004 -- 12:45:02 (EDT)
    Name: Marta, Paul and Sam -- Email:
    Location: Ann Arbor,
  • It seems to me that each person describes a person-space in the world that no one else can occupy, that is made up of all the ways that person is. When we know and love somebody we have a detailed sense of just who that person is - all the characteristics about him (I'll pick "him" because Simon is a boy and my family is all boys except me!)that you could list (funny, brave, frightened, big-hearted, sweet, goofy, generous, smart, etc. etc.), and then the other things that are harder to describe that make someone like no one else. We are so grateful for this website which has let us get to know Simon and the whole Craig/Vodosek clan better than we ever would have. We feel like we have a good sense of Simon, which is a joy for us. And a good sense of the way that Mary and Markus and Miriam love Simon with that true knowledge of who he is, which is the best kind of love in the world.

    Thank you, and we are thinking of you,
    Marta, Paul and Sam

    Tuesday, July 06, 2004 -- 08:35:12 (EDT)
    Name: Gretchen Spreitzer -- Email:
    Location: ann arbor,
  • All of us at the Michigan Business School are sending you positive vibrations and love. Your celebrate love party sounds like it was positively wonderful!

    Monday, July 05, 2004 -- 15:33:23 (EDT)
    Name: Elizabeth Kent -- Email:
    Location: Oregon House, CA US
  • Dear Simon,

    I send you my heart full of love.


    Monday, July 05, 2004 -- 14:46:18 (EDT)
    Name: Marina -- Email:
    Location: San Antonio, Texas U.S.A.
  • Dear Simon,
    I hope you are feeling better.I really liked your fun pictures.You must be having a lot of
    fun in utah.I really wish to see you again.Texas has amazing views,very fun amusment parks and great naberhoods an schools.Texas also has dangrous things like stinging bugs and poisionus things.But we are learning how to avoid them.I have made lots of very nice friends.I hope you did to.
    Your Old Friend,
    Marina P.S. I miss you a hole lote.

    Monday, July 05, 2004 -- 10:10:38 (EDT)
    Name: Irene Judmayer
    Location: Linz, Austria
  • What a wonderful party! The pictures transport a lot of positive vibrations between you all. Love and tender hugs from Linz.

    Monday, July 05, 2004 -- 04:55:23 (EDT)
    Name: Julia, Serena, Alma &amp Christoph -- Email:
    Location: Frauenfeld, Switzerland
  • What a great party you had!

    We are sending peaceful thoughts your way and keeping you close in our hearts.

    Sunday, July 04, 2004 -- 23:57:01 (EDT)
    Name: kathy -- Email:
    Location: san antonio, tx
  • Hi Simon, Miriam, Mary, and Markus!!
    Happy Independence Day! (We just set
    off some Texas-size fireworks in our
    driveway -- very dramatic).
    We have been thinking about you all
    often and send our love. Janie's
    favorite phrase these days is
    "atch diss!" -- and whenever she
    says it we remember Simon
    on the slide at Northwood when
    he was her age (almost two). We'll try
    to send pictures. We have enjoyed seeing
    the recent pictures of Simon and Miriam.
    Love, Marina, Jane, Kathy, and Nathan Schwadron -- San Antonio, TX

    Sunday, July 04, 2004 -- 20:29:29 (EDT)
    Name: The Burgers
    Location: Ithaca, New York
  • Sending a special toast of celebration to you all after enjoying the new pictures on your site today. May this week be full of good rest and great moments together!
    much love,
    Liza, Mike, Jolan and Jenna

    Sunday, July 04, 2004 -- 20:16:34 (EDT)
    Name: The Connollys (another NB family) -- Email:
    Location: Fenton, MI USA
  • Hi Simon,

    Stopping by to say Hello and to wish you a Happy 4th.

    P.S. We met your mom at the NB conference last year in Chicago.

    Sunday, July 04, 2004 -- 20:09:29 (EDT)
    Name: Williams/Logan crew at Crystal Lake
    Location: Frankfort,
  • Hi Simon and family,
    We are all thinking of you, missing you and celebrating life with you and your family. We are remembering you leaping off the sand dunes, playing baseball and swinging on the swings at sunset on the Frankfort beach and kayaking with David, creating sand creatures/castles on the beach and playing tag with cousins at Crystal Lake beach. We love you!!!!!!!!!!
    Gramma Lee, Uncle John, Annette, Steve, Rowan, Lucy, Grace, Logan, Justin, Curt, Lawrie, Madison, Lexi (and all our other family members that aren't here right now.)

    Sunday, July 04, 2004 -- 16:17:28 (EDT)
    Name: claudia and eliza -- Email:
    Location: Indianapolis, IN
  • Simon,

    We had a great time at your house, and we hope to come back soon. It was so great to see all of our Craig-side cousins, and the zoo was great. Best about the zoo was the bird show. We're so glad that you suggested we go there. We have a cool picture of you, your family and your Dad with a raven on his arm!

    Love you very much. Bye for now.

    Claudia and Eliza

    Sunday, July 04, 2004 -- 14:16:46 (EDT)
    Name: Schuyler, Emma, Randy and Rebecca
    Location: Falcon Cove, OR
  • Dear Simon,

    What great photos from your party. The clowns/ magicians looked funny and it was wonderful to see you all smiling. So much joy and love in those images!

    We are celebrating your life today, Simon: thank you for all of your blessings.

    We love you all!
    Rebecca and crew

    Saturday, July 03, 2004 -- 16:04:27 (EDT)
    Name: Sally
    Location: Seattle,
  • What wonderful pictures from your party! We especially like the ones of your whole family happily laughing together.
    love always, Sally

    Friday, July 02, 2004 -- 17:32:10 (EDT)
    Name: stephanie saenz -- Email:
    Location: slc, ut usa
  • hello vodosek's,
    thanks for inviting me to Simon's party it was great fun. That crazy Mr. Conley, he loves magicians! Enjoy all the family around you
    oxoxo Stephanie

    Friday, July 02, 2004 -- 17:22:33 (EDT)
    Name: Kyla, Scott, Victor, and Alita -- Email:
    Location: Ann Arbor, MI
  • Hi Simon! Hi Miriam! Hi Mary and Markus!

    Victor found some good jokes in his book "The Silly Little Book of Smelly Jokes." Here are a few:

    What do bats sing when it's raining?
    Raindrops keep falling on my feet.

    PATIENT: Doctor, doctor! I keep thinking I'm a caterpillar!
    DOCTOR: Don't worry, you'll soon change.

    What's the strongest animal in the world?
    A snail, because it carries its house on its back!

    What do you do when 2 snails have a fight?
    Leave them to slug it out!

    What is a snail?
    A slug with a crash helmet!

    What do you get if you cross a flea with a rabbit?
    A bugs bunny!

    We have a new baby! She's really nice. Her name is Yvette. Victor says he's a "double big brother" now.

    We are thinking about you and sending good thoughts and love your way!

    The Boyse-Peacor clan

    Friday, July 02, 2004 -- 14:12:46 (EDT)
    Name: PAMMER FAMILY -- Email: Erhard Pammer @ aoen

    Thursday, July 01, 2004 -- 20:05:21 (EDT)
    Name: Jenni McIntosh -- Email:
    Location: Standish, ME USA
  • Hi Simon,

    My name is Jenni and my sister Lawrie is Madi and Lexi's Mom. I wanted to let you know that my family and I are thinking of you and wishing that your body will feel better. My son Ryan is 10 years old and my daughter Megan is 6. I was asking if they knew any good jokes to pass on to you and they couldn't think of any so we decided to send you a poem we like by the author Shel Silverstein. It is called Hug O' War. It goes like this:

    I will not play at tug o' war.
    I'd rather play at hug o' war.
    Where everyone hugs
    Instead of tugs,
    Where everyone giggles
    And rolls on the rug,
    Where everyone kisses,
    And everyone grins,
    And everyone cuddles,
    And everyone wins.

    Consider this a hug from all of us.


    Jenni McIntosh

    Thursday, July 01, 2004 -- 10:50:16 (EDT)
    Name: Rachel Obstfeld -- Email:
    Location: Irvine , California USA
  • Hi Simon! We sent you another package of goodies yesterday. It should arrive today. I see that you have lots of family visiting. Later today, we will drive north and visit with our family at Lake Tahoe. Yesterday I lost a tooth but the Tooth Fariy forgot to come! Isn't that a bummer! Well, got to go pack the car for our 10 our drive!
    Q: Why did the cactus cross the road?

    A: Because it was stuck on the chicken's back!
    Q: Why did the roaster cross the road?

    A: Because it was the chicken's day off!

    Thursday, July 01, 2004 -- 09:47:14 (EDT)
    Name: Madi, Lexi, Lawrie and Curt
    Location: Seattle,
  • Hi Simon and family,
    Thank you for sharing your wonderful photo gallery with all of us. It is so good to see pictures of all of you -- it helps us to know a bit about your daily life. It is hard to see the ones where you are hurting. As Madi and Lexi have said a number of times "we really hope Simon's body is not hurting him".

    Madison has a joke for you (it's a Madi original) -- Why did the ocean cross the road?

    To make you happy!

    We love you very much and continue to hold you gently in our thoughts and prayers.

    M,L,L and C

    Thursday, July 01, 2004 -- 01:14:34 (EDT)
    Name: Rebecca
    Location: Falcon Cove, OR
  • Hi Simon!!

    Director Rebecca had the photo shoot planned. The signs were made with messages of love to Simon on them.

    Then co-director Randy realized that - gasp! - we could not deliver the images from Gamma Pat's computer here in Oregon!

    Sooo...when the directors and the stars of the shoot, Schuyler and Emma, return to Oberlin, we will send you our photo message.

    ...unless some technological development transpires before then ...

    We send kisses and hugs to you all this day from

    Pat, Rebecca, Randy, Emma and Schuyler


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