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MESSAGE BOARD Archive August-November 2003

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Saturday, November 29, 2003 -- 15:56:16 (EST)
Name: Gay Delanghe -- Email:
Location: Ann Arbor, MI USA
  • Mary, just checking up on you and sending good wishes to you and your family. Snow on the ground here but thank goodness it is melting. I used to love cross country skiing and pray for snow but age has changed me. I poke along at everything - choreography, technique teaching, cooking, house cleaning, sewing, ironing, piano playing, yard cleaning, house remodeling, cat petting, gardening, knitting and so forth. All goes well.

    Friday, November 28, 2003 -- 21:33:59 (EST)
    Name: loretta nelson -- Email:
    Location: hamburg, mi usa
  • simon, blessings
    p.s. my grandkids dog named "God" went for a long walk the morning of November 25th near U of M Hospital....he has blue eyes and white short-hair and a grayish stripe down his back and fluffy tail, wearing a teal blue collar with his old address on you think any of the doctors or nurses have seen you have a pet? ...what books do you like to read? do you like to paint? what is your favorite food? or game? what is your favorite color? or animal? what cartoons do you like? what tv shows or video movies do you like? what kind of music do you like? what songs or dances do you like? what smells good to you?....what kinds of food smell good? what do you like to dream about? do you like to go on trips? do you like watching clouds or the rain or rainbows or catching snow on your tongue or gloves? do you like to look at the moon and stars? and listen to the leaves rustling in the trees and gather different shaped leaves? do you like to hear frogs, and crickets, lake gulls and birdies and kittys and doggys and trains and boats and planes.....?
    have a warm snuggly lovely healthy and happy holiday!

    Friday, November 28, 2003 -- 20:58:45 (EST)
    Name: Loretta Nelson -- Email:
    Location: hamburg, mi usa
  • hello Simon
    may abundance flow to you from all areas of your life...picture the ailment shrinking smaller and smaller untill it is dissolved....this is very's called healing from within....and say every day,"everyday in everyway I AM getting better and better" Namaste' (the honorable one in me honors the honorable one in you) many blessings...Loretta

    Wednesday, November 26, 2003 -- 02:05:22 (EST)
    Name: Kris Hopkins -- Email:
    Location: Clinton, NY
  • Hi, there! I haven't been able to post anything for a while because things have been fairly jumping around here this month, including some travel just about every week (very unusual for me). In fact, this past weekend I was in Oberlin for a meeting (waved "hi" in the general direction of the Craig homestead on my way to and from events), and after a brief trip to NJ for my 25th HS reunion this coming weekend, I'll be back in Oberlin again the first weekend of December for yet another meeting. I miss my family while I'm away, but I sure do love visiting Oberlin!

    Anyway, I'm sorry to hear your counts are off again, Simon -- bruising and what-not sure can't be much fun for you. But I think it's great that you've been able to go to school for 3 weeks straight and that you were made a "Star" to boot! What a treat, huh? If you guys are like our kids, though, you probably have a few days off now, right? (Gobble, gobble!)

    Speaking of turkeys, can I tell you a funny story about wild turkeys? Last winter was a rough one for us, weather-wise. There was lots of snow, and all the wild critters got pretty hungry after a while, because the snow was covering up all their usual sources of food. The turkeys, in particular, were looking for anything they could find to eat (they're pretty big, after all, so it probably takes quite a bit of food to keep them feeling satisfied). Well, it turns out they found what they were looking for in one of our crab apple trees! These huge birds would stand underneath the tree and eye the little crab apples, and then they'd try to jump up into the branches to eat some! They were so big, though, that the branches just bent down under the weight of them, and they'd fall right off! After a few such (unsuccessful) attempts they'd instead jump up and grab a mouthful of crab apples before flopping back down on the ground again, doing this over and over again until there were hardly any crab apples left. We had such fun watching their persistence! But our favorite turkey "show" is probably still watching a whole extended family of them (several adults and a whole mess of "chicks") waddling through our yard during spring and summer, periodically pecking at bugs in the grass, on their way from the farmer's field in back of our house to the woods across the street from us. And all year long we watch the "chicks" get bigger and bigger until they're almost as big as the adults. The adults are pretty protective of them, too -- there are always a couple of them walking out in front of the chicks and a few bringing up the rear of the group, just like teachers do when they going on walking field trips with the kids at school! ;-)

    Well, gotta turn in. I have one more work day before my day of thanks, rest, and good food!

    Take care, and have a wonderful Thanksgiving, all of you!

    Kris, Rob, Emily, Danny, and Laura

    Tuesday, November 25, 2003 -- 21:00:13 (EST)
    Name: Marta, Paul & Sam -- Email:
    Location: Ann Arbor,
  • Dear Simon, Miriam, Mary & Markus,

    Happy Thanksgiving to you all! Like you, we will be remembering to be very thankful for family and friends and love! We are hoping that this Thanksgiving finds Simon feeling well and in a mood to eat lots of yummy food, and that everybody gets to enjoy some good family days together.

    Say, do you guys enjoy anagrams? These are probably more for Mary & Markus - Sam discovered some surprising anagram "twists" - Did you know the letters in "Clint Eastwood" are the same as "Old West Action"? And there's "Slot Machine" = "Cash Lost In 'Em", and "David Letterman" = "Nerd Amid Late TV". My personal favorite -"Snooze Alarms" also spells "Alas, no more Z's"!

    Our fond thoughts,
    Marta, Paul & Sam

    Thursday, November 20, 2003 -- 22:07:39 (EST)
    Name: anne, tom, and johannes -- Email:
    Location: Northfield, MN USA
  • it's been so long since we've posted, and caught up with you all. Simon, your school sounds wonderful, and congratulations on being in the cafeteria! That's really cool. We are missing you all lots, and happy that things seem to be going in a positive direction. It must be great to be at school, Simon, keep on having fun there! lots of love from us all,
    anne, tom, and johannes

    Thursday, November 20, 2003 -- 19:57:31 (EST)
    Name: Marta, Paul & Sam -- Email:
  • Hi Simon - It is terrific to hear you have been well enough to go to school for 3 weeks without interruption, just in time to be a Star! (Of course, you are *always* a star - I should say just in time to be officially noticed as one!)

    It is turning to winter back here in old Michigan. I (Marta) am a lawyer and I have been in a trial for 3 weeks and it looks like it will last for another 3 weeks. I don't know if you've ever seen courtroom trials on TV, but I can tell you that they do not seem much at all like the real thing to me. The real thing is slow and often boring, and I feel sorry for the jury that has to try to pay attention for so long! I'll keep checking in when I can. Meantime, here's to you!

    Best wishes,
    Marta, and Paul & Sam too

    Wednesday, November 19, 2003 -- 21:35:33 (EST)
    Name: Grandma J -- Email:
  • Hi simon,
    I was reading your messages and realized that I forgot to tell you thanks for putting the picture of your tumor on your 6 !/2 birthday poster, but also noticed than you have a friend in Austria from Linz. Have you been to Linz? Linz is one of my very favorite places in Austria, and I love to drive the river road (not freeway) and see the weeping willow trees and the bicyclists who like to ride the flat road beside the river because it's good pedaling on their bikes.
    Love, Grandma J

    Wednesday, November 19, 2003 -- 20:16:43 (EST)
    Name: Grandma J -- Email:
    Location: SLC, Utah
  • Hi Simon,
    I was delighted to find you at school working and smiling on "my" day at Uintah. I also appreciate your telling me so promptly that it is your "6 1/2 year" birthday commemoration, and pointing out your poster. You did well. It is very nice, and I liked the pictures that you selected, (and the one that you took). I liked Yellowstone, too. My son worked there two summers for TWA services when he was in High School. That gave us a very good excuse to go there, (to visit him). Once, the park was so full that the rangers would not have let us in if he hadn't been there. Only because I said, "My son is waiting for us, and he has a place for us to sleep", did they let us in. I also took a picture of the Morning Glory pool and think the pool is beautiful.
    That was fun to see how many vegetables
    your class could name. The comments surprised me, because some of the vegetables that kids say they like are not the vegetables you think of as kid favorites. Remember how everyone wanted the popular (to them) vegetables, and how several people had their hands up at once to try and get their personal favorite vegetable to be the one that they got to bring. I thought that it was funny that the kid who was not in the room was assigned to bring green onions. I said to my (grand)kids, "it's kind of like when you belong to an organization, and you miss the meeting that has the election of officers. If you aren't there to say "no", you will be made secretary, or another position that others don't really want. He wasn't there to bid for the vegetables that he did like. it'll be fun on Tuesday when Mrs Eaton lets you see all of the 25 vegetables "in person" (in vegetable, should I say?) I would love to be there that day, and munch on those vergetables. Too bad that it is Tuesday, not on Wednesday. I'll bet Mrs Eaton will have you write about some part of the tasting party--maybe even color a picture, or do graphs of favorites. At any rate, I'll find out on next Wed. when I come next.
    I forgot to ask how long you felt ill on the day that I drove you and your mom home.
    Oh, yes, I was going to ask about your Oma and Opa. Where do they live? I have been in Germany 7 or 8 times. Sometimes I've been on the train, and it's nice to be able to look at things, and not have to watch traffic on the Autobahn. Sometimes I drive, though. I've been in the Western parts of Germany-Munich, Salzberg, Lake Konstance, Cologne, Frankfurt. I've missed some really important places like Berlin, Bonn and Hamburg. I hope someday to see them, but I am happy for what I've seen. I love seeing all the castles along the Rhine River.
    I must leave now, and drive Ash to her girls' meeting. Love, Grandma J

    Tuesday, November 18, 2003 -- 20:31:35 (EST)
    Name: Kathy McMillan -- Email:
    Location: Chicago, IL USA
  • Hi Simon!
    You don't know me, but I know your Mom from 'way back in college... then we found each other years later in Bayreuth. (Ask her if she remembers what she was wearing!) I was actually there when your Mom met your Dad. (Maybe I can tell you some fun stories someday)
    I just wanted to let you know that I've been checking up on your website and thinking lots about you, sending good wishes. Know that good thoughts and hugs are coming to all of you from the Wilhelm family in Chicago (that's Kathy, Martin [also a German], and 13-month old Laura.

    Tuesday, November 18, 2003 -- 19:30:31 (EST)
    Name: Lee Williams
  • Glad to hear that things are going well - will keep smiling. I leave next Monday for the west coast - will visit Rowan's school on grandparent day and then we will all drive to Laguna that evening for Thanksgiving. Will go later to Seattle for a week Happy Thanksgiving to you all. Lee

    Tuesday, November 18, 2003 -- 19:30:29 (EST)
    Name: Lee Williams
  • Glad to hear that things are going well - will keep smiling. I leave next Monday for the west coast - will visit Rowan's school on grandparent day and then we will all drive to Laguna that evening for Thanksgiving. Will go later to Seattle for a week Happy Thanksgiving to you all. Lee

    Monday, November 17, 2003 -- 23:45:09 (EST)
    Name: Rebecca, Randy, Emma & Schuyler -- Email:
    Location: Oberlin , OH USA
  • Hi Simon!

    We are so happy to hear your good platelet news! We wonder what your favorite books are these days. Schuyler is reading "A Tree is Nice" this week for homework.

    We love you & three cheers for good counts!!

    Rebecca & family

    Saturday, November 15, 2003 -- 16:22:19 (EST)
    Name: Linda Britt -- Email:
    Location: Ann Arbor, MI
  • Hello Simon, Miriam, Mary and Markus,

    I miss you so much that I wanted to kiss the computer screen when the photo of Simon and Miriam came up on my screen from your home page. I'm so glad to hear the good news about Simon's counts and will do another platelet dance anyway!

    I remember the dragon and princess from last Halloween and am glad to hear that those two great costumes had another airing. Snow on Halloween?! That happened here, in Ann Arbor, last year, I think. I bet you collected all kinds of good treats on your block.

    I love you all and will be keeping you in my thoughts and prayers, as usual.

    Friday, November 14, 2003 -- 20:00:02 (EST)
    Name: Williams Calif.
  • Glad to hear the good news. We will
    been thinking about keeping that trajectory
    going. Getting any winter yet? We have some rain but really just started real fall. The leaves are beautiful about now hope the rain doesn't push them all off the trees. Glad to Simon is enjoying school. Rowan is working on a poster about China, each child is sharing some facts on a country, can't believe how much he remembers week to week. Love you,

    annette, steve & Rowan

    Thursday, November 13, 2003 -- 22:10:51 (EST)
    Name: Tracy Reeber -- Email:
    Location: Mountlake Terrace, WA USA
  • I just read your 11/10 posting & thought I would share our experience with Accutane. Our son, Daniel, was treated for neuroblastoma in 98- 99, finishing up with Accutane. I don't know anything about the new drug, but I did find that Accutane was one of the easier oral drugs for Daniel to take. It came in little pink capsules similar to vitamin E capsules, and he didn't have any problem taking them. I don't know anything about the other drug, and I know side effects vary for individuals (Daniel's were pretty light), but at least it wasn't nasty to take, like some of them!

    Tuesday, November 11, 2003 -- 20:57:46 (EST)
    Name: Angela Thomas -- Email:
    Location: Tiffin, OH
  • So sorry to post this in your message board; however, we're in Orlando and I don't have your email here. Just read your 11/10/03 post. Please go to the page and read about retnoid therapy by Villiblanca (CHLA) if you have not already. (We're leaning toward doing Fenritnide over Accutane next and just wanted to share an article we found helpful.) Today's MIBG showed no uptake - whatever in the world that means. Again so sorry to post like this in your message board but wanted you to have that info if you didn't already.

    All my love and misses,

    Tuesday, November 11, 2003 -- 12:28:20 (EST)
    Name: Irene Judmayer -- Email:
    Location: Linz, Austria Upper Austria
  • Hier ist ein giiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiigaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaantiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiischer Mega Platelet-Dance aus Österreich an Simon. Und eine Nervenunterstützungsdosis an euch alle.
    Liebe Grüße, Irene

    Monday, November 10, 2003 -- 22:13:55 (EST)
    Name: Seung-Yoon Rhee -- Email:
    Location: Ann Arbor, MI U.S.A.
  • Hi Simon, Miriam, Mary and Markus!

    I was very glad to see Simon so healthy in the picture on the front page. And Miriam has grown up so pretty. I remember the time when Markus brought Simon to the U of M Musical Society ticket line to purchase half-priced tickets for students. It was a very early, cold morning, and watching Simon play with his Dad was a great joy.

    By the way, I gave birth to a baby boy, Eddy, on Sept. 19th. I hope Eddy could meet all of you someday!

    Monday, November 10, 2003 -- 22:13:14 (EST)
    Name: Seung-Yoon Rhee -- Email:
    Location: Ann Arbor, MI U.S.A.
  • Hi Simon, Miriam, Mary and Markus!

    I was very glad to see Simon so healthy in the picture on the front page. And Miriam has grown up so pretty. I remember the time when Markus brought Simon to the U of M Musical Society ticket line to purchase half-priced tickets for students. It was a very early, cold morning, and watching Simon play with his Dad was a great joy.

    By the way, I gave birth to a baby boy, Eddy, on Sept. 19th. I hope Eddy could meet all of you someday!

    Monday, November 10, 2003 -- 22:11:21 (EST)
    Name: Kris Hopkins -- Email:
    Location: Clinton, NY
  • Wow -- numbers going up, some clean test results, and trick-or-treating in the snow! Sounds like fun all the way around!

    Well, for the first time that I can remember in the 12 years we've been trick-or-treating, we *didn't* have snow for Halloween ... or at least cold, damp weather or other signs of late fall in Upstate New York -- in fact, we walked from house to house in our neighborhood in balmy, breezy, 70-degree weather this year! (Unheard of, but *very* enjoyable!) Emily went to a summer camp reunion slumber party that evening, and Rob was at a barbershop meeting out of town; so Danny and Laura and I did the rounds together this year -- Laura was a pumpkin and Dan was a scary guy of some sort or other. The funny thing about his costume, though, was that it had floppy fabric "ears" that would start whipping around in the breeze, covering the mask holes where his eyes peeked out until he couldn't see anymore. Then this "scary" guy would shriek "Help, Mom -- I can't see!!!" We got laughing about how silly it was that a scary monster guy was "upset" and was calling for his mommy. But I guess even scary monster guys get scared and/or need help sometimes too! ;-)

    Happy Anniversary! And best wishes to one and all from:

    Kris, Rob, Emily, Danny, and Laura

    Monday, November 10, 2003 -- 21:42:42 (EST)
    Name: Ann Longsworth Orr -- Email:
    Location: New Haven, CT USA
  • Hello Mary, Markus, Dragon, and Princess --

    Many times when I talk to my parents on the phone, I ask for news about your family. My mom finally told me the other day, "CHECK THE WEBSITE!" -- so I did, and have really appreciated the chance to see your pictures, stories, and get an update (much more reliable that the things my parents make up when I ask). You are all very much in our prayers and thoughts and I hope we will see you in Oberlin sometime soon.

    Simon, if you like potty humor, let me know, and I will tell you a funny joke that I heard on Prairie Home Companion not long ago.

    Love from Ann, Danny, the duck, and the clown.

    Sunday, November 09, 2003 -- 21:00:07 (EST)
    Name: Katie Kyndely -- Email:
    Location: Ann Arbor, MI USA
  • Hi Mary, Markus, Simon and Miriam,
    It is so good to hear of your life in Utah. How exciting. And also the progress with Simon's care. Even though Miriam is not a match, it still sounds hopeful. I wish you all the best and think of you often. Ken shares updates at church.
    I am still teaching pediatric students and wonder if it is okay to show them Simon's site. It is such a great way for family and friends to keep in touch.
    Wishing all of you the best - you are in my thoughts often.
    Katie Kyndely

    Sunday, November 09, 2003 -- 18:47:43 (EST)
    Name: carol longsworth -- Email:
    Location: Oberlin, Ohio USA
  • Hello, dear people, Bob and I think of you so often and send much love and prayers your direction. Happy Anniversary! What a beautiful wedding that was. Carol

    Saturday, November 08, 2003 -- 16:34:54 (EST)
    Name: Gari Stein
  • Hurrah for good news!!!!! Happy anniversary to Mary and Markus. Snow???? who is ever ready for that glorious white stuff...Did I ever tell you that I have a new precious grandaughter, Ella Rae, born the end of August....Thinking of you always and sending you much love. MWA!!!!! (big kiss) G

    Thursday, November 06, 2003 -- 21:22:31 (EST)
    Name: Sally
    Location: Seattle,
  • So glad to hear all the encouraging news! Jim is at the COG conference in Dallas; I told him to try to find your doctor to talk with about you, Simon. I hope your Halloween was great fun. Here, we had a little witch and a Punk Rocker!!
    much love from , Sally and all

    Thursday, November 06, 2003 -- 05:48:56 (EST)
    Name: Becky Smith -- Email:
    Location: Mooresville, NC
  • Hi Simon and family,

    I log on to your web site several times a week; I don't know WHY I haven't signed in before!

    Mary, I just want to thank you for all the compassion and wisdom and experience you share on the NB Listerv and for all the things you write there that are helpful to so many other people. You ARE making a difference!

    Hope the music that is in your home continues to fill your souls! :-)

    Wednesday, November 05, 2003 -- 22:50:18 (EST)
    Name: Jennifer Click and Carolyn Coveney -- Email:
    Location: Falls Church, VA
  • Simon, we are so happy to see your test results looking better. Did you have fun trick-or-treating in the snow? We have never gotten snow that early where we live! What fun.

    Tuesday, November 04, 2003 -- 15:21:49 (EST)
    Name: Madi, Lexi, Lawrie and Curt
    Location: Seattle,
  • Hi Simon,
    What did you dress up as for Halloween? What was Miriam? Madi was a butterfly and Lexi was Winnie the Pooh (we borrowed a great Winnie the Pooh hat from your mom's friend Sally Olson and her family (-her girls generously shared with Lexi). We hear you had snow brrrrr! it was cold here too but, no snow. I hope your mom and dad had a good night out together in honor of their 11 years together. We do indeed remember the Halloween connection.

    we love you all and hold you in our thoughts and prayers always,

    Madi, Lexi, Lawrie and Curt

    Tuesday, November 04, 2003 -- 02:39:00 (EST)
    Name: Irene Judmayer -- Email:
    Location: Linz, Austria Upper-Austria
  • Sending You all a big package of energy, love and hope from over the seven seas.

    Monday, November 03, 2003 -- 19:11:49 (EST)
    Name: The Thomas Team Mom -- Email:
    Location: CHOP,
  • Hello from CHOP! Wishing you all the best!
    Love, Angela

    Friday, October 31, 2003 -- 22:22:43 (EST)
    Name: amy -- Email:
    Location: ann arbor, mi
  • Dear Simon and Miriam:

    My little ones are tucked in their beds and you are probably still out trick or treating because of the time difference. Hope you got lots of candy and that all the test results you get this week will be sweet as well. Keeping our fingers crossed for you!

    Thursday, October 30, 2003 -- 19:29:05 (EST)
    Name: Lee Williams
  • Simon - I hope you and Miriam have a wonderful halloween. I am going over to Grace and Logan's tomorrow evening to take pictures of their costumes and will send you a copy. Hope all the tests go well. Will be anxious to hear. Love. Lee

    Tuesday, October 28, 2003 -- 08:58:28 (EST)
    Name: carol longsworth -- Email:
    Location: oberlin, ohio usa
  • Good morning from Oberlin! I was thinking of you today and want to send hugs and good wishes. I enjoyed seeing your picture with Miriam at Yeloowstone Park. Isn't it a wonderful place? Love, Mrs. L.

    Sunday, October 26, 2003 -- 09:02:31 (EST)
    Name: Kris Hopkins -- Email:
    Location: Clinton, NY
  • Dear Miriam,

    I want to say how very brave I think you were when you had blood drawn the other day. I know that can be a very hard thing to do, and it sounds as though even your parents thought it hurt when they did it (you guys were brave, too!). Did you know that some wise person once said that bravery isn't doing hard, scary, or painful things without being nervous or afraid -- bravery is doing the hard things that need to be done even though we *are* nervous or afraid. That was really hard work, and I hope you feel very proud of yourself for having done it!

    Dear Simon,

    I'm guessing you were probably able to help your family members be brave when they had their blood drawn recently -- you've been having to do lots of brave things for quite a while now, haven't you. And you know what else, I'll bet you feel incredibly fortunate to have such loving, caring family members (and from what you said when you lit a candle in church the other day, I guess I already know that you do! :-). You can know that they love you *very* much, since they all agreed to have their blood drawn, in case one of them can help you out with a match. And when you think of all the people around the world who donate the blood that's given in transfusions, it's kind of like having a whole lot of love flowing in and out of veins all around the globe, isn't it?! Whenever I get nervous about giving blood, I just think of that, and it makes me feel happy and much more relaxed! And I know that kind of love can often work miracles, because right when I was born several family members and friends dontated some of their blood to help me get healthy again (I had a problem with some antibodies from my mother's blood that were hurting my own blood cells) -- it still makes me happy to think of having had their love flowing in my veins for a while after I was born! :-)

    So good luck with those blood and other tests -- we'll be thinking about you while you're waiting for the results. Best, Kris, et al.

    Saturday, October 25, 2003 -- 17:58:08 (EDT)
    Name: Marta, Paul & Sam -- Email:
    Location: Ann Arbor,
  • Hi Simon and Miriam and Mary and Markus,

    It seemed important to say Hi to all of you this time as you have all had to tough-out having needles in the arm, and it sounds like everyone is pretty serious right now about figuring out the next steps for Simon. Our hearts are with you all the way, as well as our admiration (and special kudos to Miriam for her extra bravery!). And we are always glad that you are so good at enjoying friends and the fun stuff - like Halloween - at the same time that you are getting your serious work done.

    Love to all,
    Marta, Paul & Sam

    Wednesday, October 22, 2003 -- 12:37:20 (EDT)
    Name: Gari Stein
  • Hello Simon and everyone, glad to hear those platelets are staying high. The hiking sure sounds grand. I wonder what
    Utah is like in the Fall. The leaves here have been beautiful and the weather sunny and divine. I am thinking of you often and send you all my love. Gari

    Tuesday, October 21, 2003 -- 12:46:22 (EDT)
    Name: Kris Hopkins -- Email:
    Location: Clinton, NY
  • Glad to hear your counts are staying up relatively high, Simon -- good for you -- and without treatment for two weeks, too! Impressive!

    Well, I don't know about you, but we're sure having fun with words at our house. We have a new game we play with Laura's sight words, since we have a whole pile of them now: first we put them in piles based on what kinds of word they are (person, place, or thing words; action words; colors; describing words; etc.), then Laura picks a word from each pile and puts them all together to make silly sentences. One time she had a sentence that looked something like this: "The six big pink cats ran up and down." (Pink cats???!) Another time she had a sentence about "purple oranges!" There are lots of ridiculous things you can do with words, aren't there??

    We're thinking of you all, as always! Take good care of yourselves. Love,

    Kris, et al.

    Monday, October 20, 2003 -- 22:10:31 (EDT)
    Name: amy sheon -- Email:
    Location: ann arbor, mi
  • Simon:

    Garrison Keillor did a whole show of jokes on his radio program last week. I only heard a couple but I thought this one was pretty funny:

    Why does the fireman take a doberman with him to fires?

    To help him find the hydrant!

    You might need your mom or dad to explain it a bit....

    Enjoying an Indian Summer blast of 78 degrees here in Ann Arbor today....

    Sunday, October 19, 2003 -- 06:34:56 (EDT)
    Name: LeeWilliams
  • Simon- it was good to read about your trip to Yellowstone. I have been there twice, once when I was l5 with my parents and brother; and once with my children. We all loved it. When I was there at l5 a bear followed us home once and it was scary but fun. I am glad you are taking spelling in school and enjoying it generally. Think of you often. Love, Lee

    Saturday, October 18, 2003 -- 21:11:17 (EDT)
    Name: Deborah Gurt -- Email:
    Location: Northfield, MN USA
  • Hi Simon-
    It was exciting to read that you all went to Yellowstone. Lev is very keen to go there ever since he did a unit in school on wolves. (I think a lot of wolves live there). Here in Northfield, we have had swarms of Ladybeetles all over everything - including the house! Jacob doesn't like them very much and shouts at them, "eebug, out my house!" I think they like all the warm weather we've been having. Well, we miss you and Miriam, and your mom and dad, too. I hope we'll get a chance to see you soon. Keep up the good work on your spelling words!
    Deborah, Marek, Lev and Jacob

    Saturday, October 18, 2003 -- 20:47:09 (EDT)
    Name: Schuyler Samuel Coleman -- Email:
    Location: Oberlin, OH USA
  • Dear Simon,
    I had my first spelling test this week, too. I had some of the same words that you did. What else are you doing at school?
    I hope that the next spelling test you have is good. How are you going to dress up on Halloween? I'm going to be a devil that's kind of like a wizard. I wish you good luck, Simon.

    love from your friend

    Friday, October 17, 2003 -- 09:38:44 (EDT)
    Name: Jörg Mosthaf -- Email:
  • Hallo Simon, Miriam, Mary und Markus,
    könnt Ihr mir bitte Eure neue Postadresse per email zuschicken?
    Gruß, Jörg

    Wednesday, October 15, 2003 -- 15:15:40 (EDT)
    Name: Sid -- Email:
    Location: Ann Arbor, MI
  • Hi Simon,
    Sid from Ann Arbor here. remember me? So , it is good to see you are doing well, and that you have moved to SLC.
    I was sick for a while, so, I didnot get a chance to come ans see you before you left, but, it is good to see your progress.
    Best of luck,

    Tuesday, October 14, 2003 -- 01:17:57 (EDT)
    Name: erik
    Location: , MD
  • Hi Simon -

    Your link to pictures of the Old Faithful Inn are quite memorable for my family and me. We visited the park with Sarah and Erickson three summers ago when they were 8 and 6 - just about your age. It was a great time and there were so many animals to see along with the beautiful mountains, gorges, and geysers.
    Fifty years ago, my Mom was a waitress in that very building - the Old Faithful Inn for a summer. Fun! Fun!

    Take care!

    Saturday, October 11, 2003 -- 22:50:39 (EDT)
    Name: Kris Hopkins -- Email:
    Location: Clinton, NY
  • I'm sorry you had a fever recently that brought you to the hospital, Simon. But I can't tell you how truly *honored* we feel at the thought of having contributed a joke that landed you your very own personal mention on the televised Bingo program there! It must have been way-cool to hear the announcer call out your name and tell your joke, eh?

    And do you remember the version of that same joke that you made up and told to us when we were visiting you in Oberlin about a year and a half ago? You asked "what's black and white and (I can't quite do the rest of it justice, but I'll try...) pink and green and red and purple and brown and blue (or something like that!)??? Answer: "Nothing!" (Of course! What could possibly be all those colors?!) I really liked that variation on the pickle theme!

    Anyway, I hope you're feeling better soon and can go back to school -- I can imagine how hard it must be to miss seeing your new friends; but I'm sure they'll be glad to have you back again whenever you're feeling more chipper.

    Hoping that happens really soon, I send lots of warm, healing energy from unseasonably warm (!) Upstate New York! love,

    Kris, et al.

    Kris, et al.

    Thursday, October 09, 2003 -- 00:25:25 (EDT)
    Name: Carol Shultheis
  • Yellowstone is a great place, glad you got to go. Way to go with being able to go to school a whole week. Just think how smart you will be getting after learning your spelling words. I think about you a lot and Tim often asks how you are doing. Carol

    Wednesday, October 08, 2003 -- 22:13:44 (EDT)
    Name: Kris Hopkins -- Email:
    Location: Clinton, NY
  • Wow -- Yellowstone! It's been *years* since I've been there, but I still remember Old Faithful.... What a wonderful (and sometimes sulphurously stinky!) place that is, eh? And you saw all kinds of wild critters, too? Like I said -- wow!

    Laura's coming home almost every day with reading homework -- are you, too, Simon? They have "sight words" and vocabulary words and all kinds of other words they're looking at and learning to read. Sometimes it feels like hard work, but sometimes it also feels really *cool* to be able to read things on her own now (which she wasn't able to do even just a few weeks ago!). Pretty amazing what you guys learn and how quickly you learn it, huh?

    And Miriam, are you learning all kinds of neat things at your school, too? I'll bet you are! And I thought of you the other day, too, because Laura's taking her very first ever dance class this year (did I tell you this already?) -- and the other day her teacher gave the kids long pieces of cloth that they swished and swirled and ran with and jumped with and threw up in the air and let fall gracefully on the floor -- then the kids had to "throw" themselves up in the air and fall down gracefully, just like their cloths did! They had *such* fun -- and all the adults watching wanted to run right out there and try it, too!

    Well, I've gotta get ready for an early morning tomorrow -- maybe you do, too. So "good night!"

    And in the meantime, we'll keep thinking good thoughts for you all.

    Kris, Rob, Emily, Danny, and Laura

    Wednesday, October 08, 2003 -- 18:04:05 (EDT)
    Name: Grandma J -- Email:
  • Hi Simon.
    I missed you today in first grade. There were several people absent, including Austin. Austin was not sick. He stayed home because his family adopted a new baby sister. Now he is outnumbered, because he has a sister in 7th grade, too.
    For the song, "Clifford" was chosen. I was checking pages of letter and word sounds, and noticed that yours was among them. I know that you know so many more words now than you did at the start of school.

    Two student nurses from Westminster College came and presented a learning session on Germs, and How They Are Spread. I was thinking at the time, "Simon knows about this, as he has to take care of his central line."
    They put glitter glue on Conner's hands, and had them first wash just with water-no soap. The glitter glue, (playing the part of bad germs), stayed on Conner's hands. Then he washed the correct way with soap, and one of the two nurses watched to direct him to do it well. That time, his hands came out clean. They also put fake "germs" on a couple kids' hands and had the kids shake hands from person to person. Then they closed the blinds, and turned on a lamp with a blacklight bulb, and went from person to person with the blacklight. It showed the "germs" (pretend) under the blacklight, and even some which fell off someone's hands onto the carpet. It was a good way to think of how germs travel.
    There was an announcement for anyone who hadn't turned in theri fundraiser packets yet to bring them in, and for parents who have not yet signed up for SEP conferences to choose a time.
    Nick fell off the monkey bars,and scraped his left elbow and his knee, and got the wind knocked out of him. He got really scared, and sat on my lap, but couldn't stop crying until he rested a bit, but then he came back all smiles to his reading group.
    I talked to Ms Jennings in the hall. She said that the school will be saving the "Boxtops for Education" (from cake mix and cereals, etc. this year. We have not started, as the boxes were accidently thrown away from last year when they were getting ready for all of the construction in the school this year. She said that maybe each room could make their own box for their room, and that way we could get started.

    And that, my dear Simon, is all of the news that I can think of from this morning at school, except to say that we missed you!

    Love, Grandma J

    PS. I'm working in Peds Clinic with Amy Empey. She knows you from Clinic

    Thursday, October 02, 2003 -- 15:33:18 (EDT)
    Name: Code_Blue_Dreamchaser -- Email:
  • Hey buddy. Great to hear that you numbers are going up. I'm glad that you like school & I bet you are doing wonderful. You are in my thoughts. Lots of hugs.

    Thursday, October 02, 2003 -- 15:29:57 (EDT)
    Name: Jean Watson -- Email:
    Location: Dover, OH
  • Hey Simon, Alex came home from school the other day all excited about a website that his class had been exploring. He showed it to me, and I agree - it's neat! Perhaps you'd enjoy it too - it's

    Enjoy! Love, Jean

    Thursday, October 02, 2003 -- 15:29:49 (EDT)
    Name: Jean Watson -- Email:
    Location: Dover, OH
  • Hey Simon, Alex came home from school the other day all excited about a website that his class had been exploring. He showed it to me, and I agree - it's neat! Perhaps you'd enjoy it too - it's

    Enjoy! Love, Jean

    Wednesday, October 01, 2003 -- 21:54:50 (EDT)
    Name: Kris Hopkins -- Email:
    Location: Clinton, NY
  • Zowie -- look at those counts soar! What great news! It's good that the docs are preparing you for the potential of continued frustration ahead (although you're probably used to that by now!); but it's also great, I'm sure, to be enjoying a little lull in the treatment schedule.

    Enjoy those canyon hikes for all the rest of us who have no canyons where we live!



    Tuesday, September 30, 2003 -- 19:36:05 (EDT)
    Name: Trish -- Email:
    Location: Ann Arbor, MI USA
  • Hi all,
    I was just thinking about you at church on Sunday and wondering how things are. Sorry to hear of all of your issues with ITP and problem crossmatching. I used to be one of the folks in the blood bank dealing with trying to help find compatible blood so I can appreciate your frustration. I'm glad things are better now and glad to hear you're doing better, Simon. Pulling out your hair must be fun. Many of us want to do that often and can't. Remember, I think Yul Brynner is pretty sexy... Am I dating myself?

    Love to you all,

    Monday, September 29, 2003 -- 18:52:46 (EDT)
    Name: Marta, Paul & Sam -- Email:
    Location: Ann Arbor,
  • It is *great* to hear that you all are feelin’ gooooood. And belated Happy Birthday Miriam! We recently came across some very difficult questions, and we were wondering if you guys have any good answers (just for fun!). Here goes:

    Why don't you ever see the headline "Psychic Wins Lottery"?
    Why is "abbreviated" such a long word?
    Why is the time of day with the slowest traffic called rush hour?
    Why isn't there mouse-flavored cat food?
    When dog food is new and improved tasting, who tests it?
    Why didn't Noah swat those two mosquitoes?
    Why don't sheep shrink when it rains?
    Why are they called apartments when they are all stuck together?

    Hope all stays "feeling good" for a good long while - Marta, Paul, & Sam - and "Hey,I want some improved tasting food" from Bear the Dog

    Sunday, September 28, 2003 -- 18:33:25 (EDT)
    Name: "Grandma J" -- Email:
    Location: Salt Lake City, UT
  • Hi Simon ! I finally got a moment to check your website which Ms. Eaton told me about on the first or second day of school. It is fantastic. You are a worthy star. i love the fact that you love school like I always did. I love your smile and your good work. I hope to see you every single Wednesday.
    Love, Grandma J

    Sunday, September 28, 2003 -- 05:30:52 (EDT)
    Name: anne, tom, and johannes -- Email:
    Location: Northfield, MN USA
  • whoo hooo! yay SImon for getting through chemo with lots of lovely platelets. They must have been dancing on their own in there! Must have been a fun visit with Gran, and the canyon trip sounds wonderful, we want to go! (AS Tom says, his major concession in living in the midwest is giving up topography)

    Winter is starting early here, it feels like, we're already bundling up Johannes in his warm woolies. and it's harder to play in the park with mittens, isn't it?

    anne, tom, and johannes

    Saturday, September 27, 2003 -- 12:08:05 (EDT)
    Name: Gari Stein
  • Happy Birthday to Miriam. I can't believe you are so old. Welcome to Grandma Ann. I am sure she is a welcomed sight. So much news, oh my goodness. Loving and thinking of you everyday. Gari

    Wednesday, September 24, 2003 -- 20:08:31 (EDT)
    Name: Kris Hopkins -- Email:
    Location: Clinton, NY
  • Happy Birthday, Miriam! Boy oh boy. (Girl oh girl?) Four already! You're getting so OLD. I'll bet you can do lots of things now that you couldn't do when you were only 3 (although 3 was lots of fun, too, wasn't it?!)

    Good luck with your continued juggling and decision making -- I'm sure it's tough on all of you, but at least you seem to be getting very good at making tough decisions....

    Here's a joke from Dan (we think he made it up...):

    Q: What's a secret agent's favorite dish?
    A: 's pie! ("Get it?" asks Dan -- "It's pie ... 's pie ... spy?!?")

    Our continued best wishes to you all. Love,

    Kris, et al.

    Monday, September 22, 2003 -- 06:28:31 (EDT)
    Name: Lee Williams
  • Happy, happy birthday Miriam. I know I am a few days late but I hope it was a special day with family, including Gran. I am so glad to hear that you are enjoying your new school. Isabel, the hurricane was a surprise in the damage it did here in Baltimore and on the Eastern shore. Liddy and Mara lost electricity - Liddy has hers now but not Mara. Anyway a hug from me and to the rest of your family. Lots of love, Lee

    Sunday, September 21, 2003 -- 21:14:00 (EDT)
    Name: amy sheon -- Email:
    Location: ann arbor, mi
  • Very happy birthday to Miriam!

    What a tightrope you're walking with balancing difficult decisions.

    Jesse and I just finished a great book that was written during my early childhood but I never heard of it. I'll bet Simon would love it..the various adventures of Flat Stanley.

    There's even a fun website (<<not>> from the era of my youth) about adventures real children have sending their own "flat stanley's" around the globe--I hope Simon will like it:

    Sunday, September 21, 2003 -- 14:31:39 (EDT)
    Name: Williams family
    Location: Oakland, CA
  • Happy Birthday to you. Happy Birthday to you. Happy Birthday dear Miriam happy birthday to you. Wish we could sing it to you in real life!! Think about you all as you celebrate. Try to get out to see the aspens, and cottonwoods turning in Utah the next month. It's well worth
    the effort. I love the Southwest in the fall!! The contrast of the red rocks and yellow shimmering leaves is breathtaking.
    Hi to Gran from us.

    Love you,


    Saturday, September 20, 2003 -- 09:19:03 (EDT)
    Name: Andre, Lindsay & Lance -- Email:
    Location: Kentwood, MI USA

    We hope you are having a fabulous 4th Birthday! Eat some yummy cake (I can still taste the yummy chocolate cake from your 3rd Birthday party) and have a ton of fun.

    Thinking of you all,
    Lindsay, Lance & Andre

    Saturday, September 20, 2003 -- 08:55:16 (EDT)
    Name: anne, tom and johannes -- Email:
    Location: Northfield, MN USA
  • Happy Birthday MIriam!!!!!!!!!!! I remember being there when, or just after, you were born, and I can't believe you are so old already! Congratulations!!
    And good luck to Simon on the rest of the chemo, and blood transfusion. We hope you get through this last day, and that counts start to rise again after that.

    lots of love,
    anne, tom, and johannes (who is sporting his first haircut, rather amateurishly done by his mom...)

    Wednesday, September 17, 2003 -- 19:32:34 (EDT)
    Name: Kris Hopkins -- Email:
    Location: Clinton, NY
  • Heading to Oberlin tomorrow -- will think of you while I'm in town, walking the streets that you walk whenever you go to visit your grandma and grandpa there!

    Hope the platelets are hanging in or increasing some. Will do the O-HI-O platelet dance/song with Rebecca Cross and family while there, OK? ;-)

    Take care, and enjoy being far away from hurricanes!


    Monday, September 15, 2003 -- 22:19:40 (EDT)
    Name: Raj Sanghvi -- Email:
    Location: Wixom, MI USA
  • Simon,

    Even though you are not with us in New York anymore it does not mean that we do not think of you and your family. Amit is in NY right now getting his fifth cycle of 3F* antibody treatment. Looks like he may have developed a HAMA as he has no pain. Amit is being evaluated for school as he needs special learning due to his vision impairment, Thanks to Neuroblastoma. Other than that we are doing well and making some progress in our battle. You and your family are in our thoughts and prayers.

    Lots of Love,

    Family of Amit Raj Sanghvi

    Monday, September 15, 2003 -- 17:33:55 (EDT)
    Name: code_blue_kkiimm33 -- Email:
    Location: West Warren, MA USA
  • Hi Simon! What an adorable picture! I am so happy you like school. My little girl loves it too, but never tells me anything about it when she comes home! I can't even drag it out of her! Know that I've been thinking about you, and hopped on here just to see your smile! Hugssssss kiddo! :)

    Sunday, September 14, 2003 -- 16:12:15 (EDT)
    Name: Marta, Paul, Sam -- Email:
    Location: Ann Arbor,
  • Hey Simon and Miriam - Thanks for the update on school. We can just imagine you guys being so busy and excited and making friends! Utah is lucky to have you!

    Marta, Paul & Sam

    Friday, September 12, 2003 -- 12:05:47 (EDT)
    Name: Chris -- Email:
    Location: Salt Lake, Utah
  • Hi Simon! Just wanted to say thank you for letting me meet you and your incredible family yesterday! You are on of the bravest boys that I know! Thank you for teaching me about Poke-mon and for letting me play with Mirium's Polly dolls. I look forward to many more wonderful visits!
    Your Friend,

    Friday, September 12, 2003 -- 11:29:55 (EDT)
    Name: Your Code_Blue_Family -- Email:
  • Hey buddy. Just wanted to let you know that we are thinking about you. Hope you are having fun in school. You are in our thoughts & prayers. Lots of hugs.

    Thursday, September 11, 2003 -- 22:41:03 (EDT)
    Name: rebecca, randy, emma & schuyler -- Email:
    Location: Oberlin, OH USA
  • Hi folks,

    Here's a ditty we wrote for Simon:

    we're dancin' the platelet dance in O-HI-O,
    we're dancin, dancin' dancin'
    wher'ere we go...
    we're sending our fav'rite champ
    some hearty cheers
    for puttin' up with all this stuff
    with so few tears
    He's a champ, he's a prince,
    yes, this we know...
    as we send our love to him from O-HI-O!!

    hugs to all of you from Schuyler, Emma, Rebecca & Randy

    Thursday, September 11, 2003 -- 12:27:18 (EDT)
    Name: Marta, Paul, Sam -- Email:
    Location: Ann Arbor,
  • Hi Simon. We are glad to here you are so interested in school and the stuff you are doing. That's a pretty impressive achievement at the same time you handling the steroids, which are nasty, and the chemo, which is no treat either. But we are also glad the steroids have helped your platelets enough that you can get chemo again. Our hearts are with you and we never forget that we are so lucky to know you, even though it is mostly just through your website. You inspire us!

    Best wishes,
    Marta, Paul and Sam

    Wednesday, September 10, 2003 -- 21:31:22 (EDT)
    Name: Kris Hopkins -- Email:
    Location: Clinton, NY
  • Sounds like it's time to get all those platelet dancers mobilized again -- good thing I just signed Laura up for a "Free Movement" class at the local arts center! (The rest of us will just have to dance on our own at home, but presumably that will have the same good effect as Laura's "official" dancing!)

    I'll bet the State Fair was terrific -- I know we've sure had some great times at the New York State Fair whenever we've gone. The rides are definitely our favorite aspect, it seems; but we've also had a lot of fun looking at all the animals that come to be shown off in the various competitions. I can't believe all the careful grooming that goes into getting them ready to show -- it's just astounding! I especially like watching folks braid their horses' manes or their cows' tails.... Then after the hair's dry, they undo the braids and brush and fluff the hair -- so much work goes into it! Have fun if you end up going back again!

    We'll be thinking about you!

    Love, Kris et al.

    Tuesday, September 09, 2003 -- 23:31:15 (EDT)
    Name: Annette
    Location: OIakland, CA
  • All,

    No rest for the weary. Can't this whole thing just give you a few free weeks once in awhile? Sorry to hear about the low platelets but great to hear you have a new form of music in the house. I think it's nice to have a piano around though I can't say much of anything for all the years of piano lessons I took and hated. I would like Rowan to be able to learn by picking out tunes not first reading music, maybe that would work better? I hear there are teachers who start that way. Good luck with getting the chemo started again. It's wonderful Simon's school has been so responsive.

    think of you often,

    Annette Steve and Rowan

    Saturday, September 06, 2003 -- 16:19:03 (EDT)
    Name: Lee Williams
  • Glad that schools starts for everyone sound good. How great to have a piano. I love having one to play with Grace and Logan, and for me. Hope thos counts straighten out. Hope Mary is having a little time to herself to explore. Love, Lee

    Saturday, September 06, 2003 -- 08:50:49 (EDT)
    Name: Anne, Tom, and Johannes -- Email:
    Location: Northfield, MN USA
  • Wow, what a week you've all had. Congratulations Miriam and Simon on your new schools, they sound wonderful! I'm sorry the counts have dropped, but glad you've got doctors who are on top of it, and glad that Simon, aside from the feeling sick, is generally feeling better. And wahooooooooooooooooooo for the piano! I'm so envious, and happy that you have one. What a perfect idea! I hope you all enjoy your new family member! We all miss you loads and loads.

    anne, tom, and johannes

    Saturday, September 06, 2003 -- 08:30:46 (EDT)
    Name: Kris Hopkins -- Email:
    Location: Clinton, NY
  • What an amazing week or two you've had! Sorry to hear about the drop in counts, but perhaps the vicristine will help those platelets and some rest and time will shoo that virus away. We'll be thinking about you on those scores.

    In the meantime, though, it's great to hear that everyone's enjoying their respective schools (I want to go to Miriam's -- can I, please, huh, pretty please???), that the medical folk in SLC are finally seeing "the real Simon," and that you got a PIANO! I very fondly remember a Baldwin we had when I was in high school -- beautiful tone.... May you have many, many happy years of music together, you and your new friend. And may it not annoy Simon *too* much in the process (we have some similar issues at our house when Emily needs to practice or Rob needs to try out a new barbershop arrangement, but I know you all will find some creative way of working things out -- you're so good at that!).

    Thanks for keeping us posted!

    Kris, et al.

    P.S. The bass of Riptide, the barbershop quartet that sent you a tape of "Blue Skies" last year, was on the phone with Rob last night and asked about you, Simon. We told him you'd had a pretty eventful summer, but that things seemed to have calmed down considerably in recent weeks. He was really glad to hear that!

    Thursday, September 04, 2003 -- 18:40:41 (EDT)
    Name: stephanie saenz
    Location: Salt Lake City, ut
  • Hi Simon and Miriam. What a great web-site. Thanks for sharing. I'll be sure to check it regularly. I'll get my e-mail address to you soon. It's at school and I don't remember it. Can you tell I/m not an internet expert like you? Maybe you can help me become more computer literate!!! See you at school.

    Thursday, September 04, 2003 -- 00:38:36 (EDT)
    Name: Code_Blue_Dreamchaser -- Email:
  • Hey buddy. Just wanted to let you know that I was thinking about you. Great to hear about the good numbers. Hope you get to feeling better soon. Lots of hugs.

    Wednesday, September 03, 2003 -- 09:27:56 (EDT)
    Name: Liz, Mike, Emma, & Lucas -- Email:
    Location: Ann Arbor,
  • It's been good to be able to read about your move to Utah, and about Simon's progress in your struggle. School got under way here - Emma started high school, and Lucas started middle school. Very exciting stuff!

    Here's a groaner we heard from a kindergartener:
    Q: Why was Tigger staring into the toilet?
    A: He was looking for Pooh!

    Tuesday, September 02, 2003 -- 21:04:44 (EDT)
    Name: Steve, Annette Rowan
  • Great to hear the good news. Sure like to hear those platelet counts and that there is some good readings on many of the tests. I am all there with the optimists!!! Sounds like you Mary got to see a bit of the Utah wilderness good to hear that. Rowan starts 1st Grade tomorrow. Sounds like Simon's already had a week. Hope he is enjoying it. It's great you can do the chemo at home.

    Hope all is well with your transitioning
    to the Utah life, and good luck to Markus on his first round of classes there.

    Love, Annette

    Monday, September 01, 2003 -- 20:55:15 (EDT)
    Name: Susan Hartman
    Location: Ann Arbor,
  • I hope you are liking your new school and home. There are still a lot of people in Ann Arbor holding you and your family in the Light.

    Monday, September 01, 2003 -- 20:15:49 (EDT)
    Name: rebecca, randy, emma & schuyler -- Email:
    Location: Oberlin , OH USA
  • Hello, Simon!

    Boy, are we glad to hear your good news! Keep up the good work, buddy!

    We would be most interested to hear how you enjoyed your first week of school, Simon. New friends and a new classroom - it must have been exciting. Since all four of us are in different schools this year, we have some interesting scheduling to do ourselves each day. I am always a little nervous the first week of school, but by the second week I feel much more confident. Perhaps it's the same way with you? ;) I wish you and Schuyler could be first grade classmates!

    We all send hugs & happy schoolbell wishes to you, Miriam, and your Mommy & Daddy.



    Monday, September 01, 2003 -- 17:09:11 (EDT)
    Name: Kris Hopkins -- Email:
    Location: Clinton, NY
  • Great platelet counts, Simon! Way to go!

    Sounds as though you're happy to have a chemo plan mapped out again, too, just to make sure the last remaining cancer cells know to "get lost." Keep up the good work, everybody!


    Sunday, August 31, 2003 -- 23:57:21 (EDT)
    Name: Julie Dybdahl -- Email:
    Location: Ann Arbor, MI usa
  • Hi Simon, Miriam, Markus and Mary!
    We've had a crazy busy summer and it's just settling down enough to be able to sit at my computer and get caught up on your website. I'm glad to hear that Simon has started school and is feeling pretty good -- good enough to outrun your parents in tag! Today was the water communion at church and we missed hearing from you there. Hope you are all settling in well. We'll keep checking on you and we'll do the dance too. Love, Julie (Kathryn's mom)

    Friday, August 29, 2003 -- 19:09:07 (EDT)
    Name: Marta, Paul & Sam -- Email: manildi
    Location: Ann Arbor,
  • Hey there Simon - We are stopping in to say we hope you have a great Labor Day weekend. It sounds like you have some good medical news. We are hoping all those platelets and good scans will help you manage the upcoming chemo without too much sickness. I was thinking about you a lot lately because I had to take some steroids (I got a really terrible case of poison ivy and I thought I was going to scratch my skin right off! - the predisone helps with the itching). I didn't like taking the pills at all, and I gotta confess I did plenty of complaining about feeling bloated and hungry at the same time, light-headed and just plain lousy. You've been brave through much harder things, but it made me realize even the "small" stuff like taking helpful drugs can be a real chore. What a champ you are!

    Till soon, with all our thoughts,
    Marta, Paul & Sam

    Thursday, August 28, 2003 -- 08:45:17 (EDT)
    Name: anne,tom,johannes -- Email:
    Location: Northfield, MN USA
  • Hye guys, we were glad to hear that Simon's scans seem to be going in the right direction, and we hope everybody's school beginnings are great!!!!! We love all of you, and hope you are feeling more at ease there, knowing your driving and biking routes a bit better! :-) I start in to work this week with meeting purgatory, and school starts next week. alas. Take care of yourselves!! we miss you!
    love, anne, tom, and johannes

    Thursday, August 28, 2003 -- 00:42:21 (EDT)
    Name: Curt Williams -- Email:
    Location: Seattle, WA
  • Hello fellow Westerners-
    We're so glad that things are looking better medically and that life is beginning to follow a normal rythm after all the change you've been through.
    Madi and Lexi start school next week but met their bus driver today who was practicing her route. They are going to riding the bus together.
    We're thinking about you guys and so happy about Simon's improved condition.
    Later - Curt
    You're all in our thoughts

    Tuesday, August 26, 2003 -- 20:38:15 (EDT)
    Name: Rebecca, Randy, Emma & Schuyler -- Email:
    Location: Oberlin, OH USA
  • Hi Simon, Miriam, Mary & Markus

    We loved reading your good news today. Sky & Emma had their VERY EXCITING first day at school today, Simon and we wish you both a very happy day tomorrow!

    sending love & hope for the healing dance to continue!

    rebecca & co.

    Tuesday, August 26, 2003 -- 13:27:56 (EDT)
    Name: Caroline -- Email:
    Location: A2, MI USA
  • Hey Simon and Miriam (and Mary and Markus)!

    Just a note to let you know we're so happy about the positive scan news, and to tell you that Hava started kindergarten today! She was up well before the alarm went off and was all dressed and ready to go before I had a chance to shower... She was also too excited to more than 10 cheerios, so I hope she lasts okay until lunchtime. I hope your schools will be wonderful and that you'll make lots of new friends, even though the old ones miss you an awful lot.

    Thinking of you,

    Caroline (now over the hill), Matt, Hava and Ruby

    P.S. Matt and I spent a weekend in Chicago last weekend and had a great time while Hava's Aunt Temi and grandparents took care of Hava. We had a great time, especially in a couple of great restaurants and on the architectural boat tour!

    Monday, August 25, 2003 -- 23:24:20 (EDT)
    Name: kathy -- Email:
    Location: ann arbor , mi
  • Hi Simon!

    Sounds like you are all settled
    (and scanned) in Utah.

    Hope you like your new school
    and teacher!

    Marina started school last week.
    She came into our bedroom
    last morning morning at 4:00 am
    having gotten dressed, brushed
    her teach, made her bed,
    and packed her backpack,
    saying "okay let's go!"

    My advice is to sleep as long as

    We missed you in Ann Arbor but
    hope to hook up sometime here
    out west.

    kathy, nathan, marina and janie

    Monday, August 25, 2003 -- 06:40:26 (EDT)
    Name: Lee Williams
  • Simon - just got back from the ocean beach (Bethany) with Lucy, Liddy, Justin, Jake, Grace and Logan. We had a good time and the kids learned to cope with small waves. Now Lucy starts meetings for teaching and Grace and Logan will be here this week during the days. Hope the beginning of the school year will go well. Glad things seem to be moving along medically. How does Markus like his teaching there? I'm thinking of you. Love, Lee

    Sunday, August 24, 2003 -- 15:40:03 (EDT)
    Name: Kris Hopkins -- Email:
    Location: Clinton, NY
  • Thanks for sharing the news on all the scans -- looks as though it's all pretty darn good news, too. I'm sure you feel as though you've been on something of a roller coaster ride lately, though, waiting for films, trying to be patient waiting for results to be interpreted, etc. -- all while everyone's getting geared up for a new year of school! Good luck as you continue the balancing act....

    We'll keep thinking about you all,


    Saturday, August 23, 2003 -- 09:05:34 (EDT)
    Name: Ms Lisa -- Email: elizabetholson
    Location: Ann Arbor, Michigan USA
  • Hello Simon and family,
    It sounds like you have had a good summer. The platelet dance must be working. I will do a platelet dance for you this evening! I often think about all of you. I will be back at school on the 26th and I look forward to a visit as soon as you can make it in. You are in my thought s and prayers.
    All my love and hope...
    Lisa Olson

    Saturday, August 23, 2003 -- 01:08:47 (EDT)
    Name: code_blue_dreamchaser -- Email:
  • Simon,
    Hey buddy. We just wanted to let you know that we are thinking about you every day. We hope that you are feeling better. Have a great weekend. Lots of hugs. We are working on our new website & want to post your picture there & also your link. Please have your mom & dad email us & let us know if it's ok. You can go look at our website @
    & your code_blue_family

    Friday, August 22, 2003 -- 10:50:14 (EDT)
    Name: Marta, Paul & Sam -- Email:
    Location: Ann Arbor,
  • Hi Simon and family! We are reading and staying with your progress, and thinking about you every single day, wishing you strength, healing and good times. As long as you were moving away from Ann Arbor, I guess it is a good thing you left before our big power outage! We are back to normal now, though, and glad for the air conditioning because we are having some *hot* days. It makes Utah sound mighty good ....

    Best wishes,
    Marta, Paul & Sam

    Friday, August 22, 2003 -- 01:46:34 (EDT)
    Name: Jen Gully -- Email:
    Location: Salt Lake City, Utah USA
  • Hi Simon and Miriam (and Mary and Markus)! We were happy to meet your mom and dad at a play tonight and heard some pretty wonderful stories about the two of you! Welcome to Salt Lake--the weather will cool off at some point, we promise :) Although we're sure that the U community and the Unitarian Church here can help you get settled, please let us know how we can help.


    Jen and Aaron

    Thursday, August 21, 2003 -- 01:14:07 (EDT)
    Name: Marcie Obstfeld -- Email:
    Location: Irvine, CA USA
  • Dear Everyone: Wow! You guys are going to win the biggest house, lots of wild medical dances, new city, new friends and now they expect Markus to work too! I know that it must mean that Simon is getting the best care if he has the biggest pile of films. We think of you all often and we are glad you are closer to us! (Now we just have to get together for a visit!) Lots of love and luck to everyone! Marcie, David, Noah and Rachel

    Thursday, August 21, 2003 -- 00:35:57 (EDT)
    Name: Raj, Rani, and Amit Sanghvi -- Email:
    Location: Wixom, MI USA
  • Simon, we were wondering why we had not seen you here in NY at MSKCC. Now reading the site has updated us. We pray for a speedy recovery and normal blood counts. We just completed our fourth cycle and are undergoing a total restaging. Amit acquired a strange infection and was hospitalized for a week here at MSKCC. We will watch over you from NY and Michigan. Stay Strong and tell your Mom she is a true soldier.

    Love and Prayers,

    Raj, Rani, Amit and Aakash Sanghvi

    Wednesday, August 20, 2003 -- 22:05:53 (EDT)
    Name: Angela T.
    Location: Tiffin!!!!!, OHIO!!!!!!!
  • Just checking in and doing ALL the dances. With love, Angela (Christi's Mom)

    Wednesday, August 20, 2003 -- 19:19:05 (EDT)
    Name: Connie Lippert -- Email:
    Location: Ann Arbor, Michigan USA
  • Hello Mary, Simon, Miram and Markus,
    Everyone here at the Lippert house is thinking about you and dancing for the optimists! Good luck Markus on your first day also.
    Your friends,
    The Lippert family

    Wednesday, August 20, 2003 -- 14:11:21 (EDT)
    Name: Gari Stein
  • Hello Simon and everyone. Good luck to Markus on first day at work. I just got back from West Virginia and the Augusta Music Heritage Center. I spent the week dancing appalachian dances, waltzes and french folk dances. I also did my own NED and platlet dance and any other dances I can muster up for Simon. My thoughts and prayers are with you as always. I miss you not being in Ann Arbor, but imagine you are living in a most beautiful place. All my love, Gari

    Tuesday, August 19, 2003 -- 19:33:50 (EDT)
    Name: Emma Mason -- Email:
    Location: Oberlin, OH USA
  • Dear Vodosek Family, Just want you to know that we hold you,Simon and each one of your family, in our thoughts and prayers daily. Love, Del and Emma Mason

    Tuesday, August 19, 2003 -- 13:08:02 (EDT)
    Name: code_blue_aprilarlady -- Email:
  • Hi kiddo! Just wanted to say Hi and let you know we think of you every day. I hope you are having a great summer. Take care sweetie....your code_blue_family

    Tuesday, August 19, 2003 -- 11:05:55 (EDT)
    Name: Your Code_Blue_Family -- Email:
  • Simon,
    Hey buddy. Just wanted you to know that we are thinking about you each & every day. Wow 8 blocks on your bike. Great job!! Have a great week!! Lots of hugs.
    Your Code_Blue_Family

    Tuesday, August 19, 2003 -- 09:21:53 (EDT)
    Name: anne, tom, and johannes -- Email:
    Location: Northfield, MN USA
  • Hey there guys, we are all still dancing away, Johannes is doing his morning taking the books out of the shelves routine (and occasionally putting them back!). We're all thinking no progression and NED, and sending our little spirits off to you this week!

    lots of love,
    anne, tom, and johannes

    Sunday, August 17, 2003 -- 13:06:20 (EDT)
    Name: Kris Hopkins -- Email:
    Location: Clinton, NY
  • Glad the power came back on in Ann Arbor so we could access your site! Continued good news on the platelet front, I see! Way to go, Simon!

    We'll keep up the platelet dance, since that seems to be working well (besides, it's fun and good exercise!). And we'll also add some No Progression and NED steps to the dance, just to cover all the bases!

    And Simon, you keep doing whatever you're doing, too, since it seems to be working well for you: looking for snails, exploring your neighborhood, hanging out with fun people at your house, meeting animals at the zoo, listening to great music, eating pasta, talking to doctors -- I'm sure it all helps!

    And thanks, Mary and Marcus, for keeping us all posted and for giving us hints about what kind of dances might be helpful! All of you are doing an absolutely amazing job.

    Love, Kris, et al.

    Friday, August 15, 2003 -- 18:26:25 (EDT)
    Name: jane -- Email:
    Location: ann arbor, Mi USA
  • Hey Simon-- great news on the platelets-- you must have some big powerful platelet producers fired up and beaming your body-- go platelets go! It has been pretty exciting around here. All of the power went out in Ann Arbor (I heard it was 53 million people)-- everyone used candles last night as there were no lights. We couldn't open the refigerator and we couldn't flush the toilets! You can imagine it was a wild time. BUt now the electricity is on and the lines at the gas stations have gone down, and everything is a bit less exciting. Hope you have lights where you are-- we are thinking of you-- love, Jane, Lance Emily and Cara

    Thursday, August 14, 2003 -- 14:24:11 (EDT)
    Name: Jacqui, George, Emily & Natalie Shambaugh -- Email:
    Location: Oakton, VA
  • We'll even have the baby join in our family NED dance tonight!
    Best to you all,
    The Shambaughs

    Thursday, August 14, 2003 -- 11:50:47 (EDT)
    Name: Marta, Paul & Sam -- Email: manildi
    Location: Ann Arbor,
  • I do believe all of Ann Arbor is hoping for an NED report! I can tell you for sure that we are. The platelet news is great - congratulations on winning a hard fought battle! We fervently hope for good news from the scans. Simon, you must be proud of yourself! Not very many of us every have to fight a battle as hard as yours - you are a true champion.

    We'll stay tuned in,
    Marta, Paul & Sam

    Thursday, August 14, 2003 -- 11:45:15 (EDT)
    Name: The Burger Family
    Location: Ithaca, NY
  • Hi Guys,
    The girls and I are putting on some fun dancing music this morning and doing a big NED dance in your honor!
    Sending much love, prayers, NED and platelet dances, and positive vibes your way,
    xoxo Liza, Mike, Jolan and Jenna

    Thursday, August 14, 2003 -- 09:28:04 (EDT)
    Name: Anne, Tom and JOhannes -- Email:
    Location: Northfield, MN USA
  • Whoohoo, look at those platelets go. and here go Johannes and I whirling around the room for a wild, NED extravaganza!!! Wheeeeeeeeeeeeeeeeeeeeee!!!!!!!!


    Thursday, August 14, 2003 -- 03:03:35 (EDT)
    Name: Julia Schwartz -- Email:
    Location: Frauenfeld, Switzerland
  • Hi Simon! I was so glad to read the good news about you this morning. Keep it up, ok? We are all rooting for you! Love, Julia and family

    Monday, August 11, 2003 -- 17:35:19 (EDT)
    Name: Beth Hospadaruk -- Email:
    Location: Ann Arbor, MI USA
  • Hi Simon and family...I tried to do a platelet dance for you but it started to rain. I think I got some of the steps mixed up! I'll try again. We've been very busy this summer and I just got caught up on your web-site and your happenings. I have a joke for you, even if there is no dinner with it, actually it is a riddle. Q. You throw away the outside and cook the inside. Then you eat the outside and throw away the inside. What did you just eat? A. Corn on the Cob. Keep up the good work on those platelets!

    Monday, August 11, 2003 -- 15:26:16 (EDT)
    Name: Your Code_Blue_Family -- Email:
  • Simon,
    Hey buddy. We wanted to let you know that we were thinking about you. Glad to hear that you are enjoying your new house. Hope you get to feeling better soon. Lots of hugs.
    Your Code_Blue_Family

    Monday, August 11, 2003 -- 14:57:03 (EDT)
    Name: Angela (Christi's Mommy) -- Email:
    Location: Tiffin / NYC, OH/NY USA
  • Just stopping by to say hello and to do a platlet dance, a big cheer and many prayers coming your way sweetheart!!

    Monday, August 11, 2003 -- 04:34:38 (EDT)
    Name: Chanda & Jake
  • Thinking of you all

    Monday, August 11, 2003 -- 00:34:14 (EDT)
    Name: Rick and Donna Gross -- Email:
    Location: Midland, MI
  • Hi Simon

    We've been doing our platelet dance, and are so happy to read that you are doing better. Hi to your mom and dad and Miriam. Hope you are all enjoying those beautiful mountains in Salt Lake. It was so nice that all of you were able to make it to Lindsay and Lance's wedding.

    Saturday, August 09, 2003 -- 13:00:17 (EDT)
    Name: jane dutton -- Email:
    Location: Ann Arbor, Michigan USZ
  • Hey SImon-- your platelets are growing like a healthy plant-- this is really good news. YOur Dad's pals in Ann Arbor are not the best dancers (they are kind of goofy actually), but they have been doing the platelet polka in your honor-- love to you from Ann Arbor-- how are those mountains in Utah? hi to your family-- Jane, Lance, Cara and Emily

    Saturday, August 09, 2003 -- 09:07:35 (EDT)
    Name: Anne, Tom, and Johannes -- Email:
    Location: Northfield, MN USA
  • Yahoo for the platelets! I'm glad they're increasing, multiplying, being fruitful. Sorry the steroids are so icky, that'll be nice to stop having to take those. WE all send big hugs, especially Johannes, who is really into giving big hugs lately.

    anne, tom and johannes

    Saturday, August 09, 2003 -- 06:32:31 (EDT)
    Name: Lee Williams
  • Simon and family- good to hear some good news - hope it continues. Hope those grandparents are having fun helping out in your new home. Glad you have your second car now. I am about to go to Maine for a week, but it's been like the tropics here - very humid with rain almost every day - supposed to be this way on the east coast til Wednesday. Love you and think of you often. Love, Lee

    Friday, August 08, 2003 -- 20:07:13 (EDT)
    Name: Kris Hopkins -- Email:
    Location: Clinton, NY
  • *So* good to hear that wonderful platelet news!!! Wow -- I guess all those platelet dances and thoughts and vibes and prayers really helped after all (and of course the medicine may have done some good, too! ;-). And it's great that you have so many talented medical people to help give advice on your case. I'm sure it's hard to know sometimes what's the right thing to do -- from what I understand, that's why they're called the medical "arts," because even doctors and nurses and researchers can have different opinions about them on occasion. But when you get several people agreeing on a particular course of treatment, that sounds like a good bet!

    We wish you continued good fortune with those platelets, as well as hopeful results from the upcoming tests. We're also crossing our fingers and saying some extra prayers that you can get back into a good treatment mode again to keep chasing those cancer cells away.

    And let's say "Go away!" to that gassy belly, too! Then you'll feel a lot more like your "old self" again.

    Have a great weekend; savor your time with visiting relatives; and enjoy that sense of relief, everyone!

    Yours, Kris, Rob, Emily, Danny, and Laura

    Friday, August 08, 2003 -- 19:18:00 (EDT)
    Name: A S R Williams
  • Simon,

    So glad to hear the good news about your platelets!!!! Go platelets Go!!!! Hope they keep going up and you feel more like running around again soon.



    Thursday, August 07, 2003 -- 17:39:56 (EDT)
    Name: Skylar Haynes -- Email:
    Location: Arden, NC. 28704 USA
  • Hello Simon I'm Skylar I am almost 5 years old. (August24th). I'm new to the Code Blue Kids Site but I wanted you to know I talked to Jesus for you today. I asked him "why you had Cancer". He didn't tell me right away and I had to go to the bathroom so I guess he will tell me tomorrow. But he did say he would hug you for me :) from your new friend...Skylar :)

    Thursday, August 07, 2003 -- 16:25:08 (EDT)
    Name: Laz -- Email:
  • Dear Simon,

    I finally have a computer that I can surf on easily, so I was just looking at your site (it's really cool!) and thinking about you. I send all my best wishes to you, to Miriam, and to Mom Mary, and Dad Markus! Give them a big hug for me, and have them give you a big hug from me too. Sing a little whenever you can — I find it always helps! With love to all of you, Laz

    Thursday, August 07, 2003 -- 00:03:30 (EDT)
    Name: Code_Blue_Family -- Email:
  • Simon,
    Hey buddy. Sorry to hear that you aren't feeling well. We are thinking about you everyday & hope you will get better soon. Lots of hugs.
    Your Code_Blue_Family

    Wednesday, August 06, 2003 -- 00:11:47 (EDT)
    Name: Rowan, Steve & Annette
  • We echo Curt, Lawrie, Lexi and Madi below.
    Love you, Annette Steve and Rowan

    Tuesday, August 05, 2003 -- 16:39:09 (EDT)
    Name: Madi, Lexi, Lawrie and Curt
    Location: seattle,
  • Our thoughts are with you daily.
    We love you guys,
    Madi, Lexi, Lawrie and Curt

    Tuesday, August 05, 2003 -- 16:21:19 (EDT)
    Name: amy -- Email:
  • Hope you all are hanging in there and that you get some good new creative ideas for the platelets and the treatment.

    So I finally heard a joke that I can remember:

    Q: Why did the chicken cross the road?
    A: To get to the other side.

    Q: Why did the chewing gum cross the road?
    A: Because it was stuck to the chicken's foot!

    Tuesday, August 05, 2003 -- 15:39:01 (EDT)
    Name: Melissa Eljamal
  • Hey guys! Sorry we missed the Northwood potluck to send you off! We are diligently looking for conferences in Salt Lake in order to plan a visit to you. Tell those platelets of yours to stick around, Simon!
    Melissa and co.

    Monday, August 04, 2003 -- 10:42:02 (EDT)
    Name: jane bishop -- Email:
    Location: Ann Arbor, MI USA
  • Wish I could be there to help you settle into your new home, sounds like you have room to spread out at last! I bet you are all enjoying deserve it, for sure. I'm finally back at my own computer after being without for several weeks at my cottage, and I loved getting caught up with your "happenings" and hearing from your mom on the "board". Hope those platelets finally decide to "stick" around!!
    Love and hugs to all....Jane


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