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MESSAGE BOARD Archive April 2004

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Friday, April 30, 2004 -- 23:47:22 (EDT)
Name: Mary Craig -- Email:
Location: Salt Lake City, UT USA
  • Dear Friends,

    I'm experiencing an internet access problem, so this is the best place for me to place a quick update.

    Simon continues to deal with pain. His pump is his constant companion, and he often chooses to "push" it for an extra boost of medicine. The pain is focused on the right side of his mouth. He feels it in the jaw, in the gums and tissues by the back right molar, and on the right side of his tongue. It now appears to be a combination of mucositis caused by the radiation treatment and tumor pain. I think the worst is the surface pain on the tissues from the radiation. We hope it abates soon, but it seems to be getting worse at the moment.

    The mouth issues make it very hard for Simon to eat. He can't occlude his teeth, so he can't chew anything. And his tissues are increasingly sensitive to foods, especially anything acidic. He even screamed in pain yesterday when he tried to drink his favorite tea (Wild Berry Zinger with lots of honey). Needless to say, he's losing weight. We're trying hard to find things that he can tolerate. Thank goodness for Annie's "Bunnie Noodles", goat cheese, Chinese broth with tofu, and milk!!

    We remain hopeful that the current miseries abate as his body heals from the after-effects of radiation. And we also hope that the chemo (April 21-25) blasts the cancer cells.

    We did blood counts yesterday, and everything was holding strong. ANC was 2.1 (he would need neupogen if he went below 1.0), platelets 64. We'll check counts again in a couple of days, just to be sure he doesn't need a transfusion of red cells or platelets.

    Please continue to keep Simon in your thoughts and prayers and wish good healing thoughts for him so that he can enjoy more pain-free times!


    Thursday, April 29, 2004 -- 21:30:59 (EDT)
    Name: Lippert Family -- Email:
    Location: Ann Arbor, Michigan USA
  • Hello Mary, Simon, Miriam and Markus,
    Just checking up on the website to see how things are going. The site looks great and it's so nice to see the pictures and read about what's going on.
    We're all praying for you and keeping you in our thoughts for recovery. You are certainly the bravest boy I've ever heard of Simon!
    Connie, Bob, Alicia and George

    Thursday, April 29, 2004 -- 16:31:05 (EDT)
    Name: The Street and Roof Cat -- Email:
  • I'm sorry, i saw a lot of mistakes at my message I sent just now. It' s very late time in Germany - about half past ten p.m...........
    Heinz The Street and Roof Cat

    Thursday, April 29, 2004 -- 16:27:48 (EDT)
    Name: The Strett and Roof Cat -- Email:
    Location: Oelbronn, Germany
  • Lieber Simon!
    Heute Abend musste ich nach einem sehr langen Tag doch noch schnell auf deine Homepage schauen, weil ich wissen wollte wie es dir geht. In Germany we have a very bright (and dry) spring an dall the pupils are waiting for 30th April, because the want to do some jokes in the night from 30th April to 1st of May. In Germany it's called Walpurgis Nacht - the night of the witches......... o.K. I think you should have Angels instead of witches.
    I hope you are feeling better. Lots of greetings to you and your sister and parents.

    Heinz - also called "The Street and Roof Cat"

    Thursday, April 29, 2004 -- 12:49:24 (EDT)
    Name: Patrick Flynn -- Email:
    Location: Wichita, KS USA
  • Hi Simon,
    My name is Patrick Flynn I am the step father of Justin who also had NB in his jaw. I absolutely love your web page. I really like the pictures, especially the Captain Underpants pictures. Justin loved the Captian Underpants books. Here's to hoping that today brings more comfort and a little less pain and tomorrow is better than today


    Thursday, April 29, 2004 -- 01:17:37 (EDT)
    Name: annette
    Location: oakland,
  • Mary,

    Steve sent the charger. You must really rate to have him remember to do that so quickly! He's off on the East coast now for work in Philly and then his 25th High School reunion in Baltimore. Just heard that Gracie has chicken pox. Hope Steve had it as a kid or he could be in big trouble. Love the new photo of Simon and hope the pain pump keeps helping and better yet that his need for it diminishes.

    miss and love you,


    Wednesday, April 28, 2004 -- 08:55:44 (EDT)
    Name: Steve Robertson -- Email:
    Location: St. Paul, MN
  • Hello,
    I've been thinking about you all this morning and hope that everyone had a good restful night. I'm sure it's a drag to be connected to the pain pump, Simon, but I'm glad it seems to be helping at night.

    I heard a joke the other day that's just at my level, so, of course, I can't resist passing it on. A little girl goes to see the doctor. She's got a pea in one nostril, a grape in the other, and a string bean stuck in her ear. She says to the doctor, "I don't feel good."
    The doctor replies, "The problem is clear to me. You're not eating right!"

    Take care!

    Tuesday, April 27, 2004 -- 12:44:52 (EDT)
    Name: Marta, Paul, Sam -- Email:
    Location: Ann Arbor,
  • What a happy moment when I opened the site today and saw that very nice picture of Simon, looking busy, thoughtful, engaged, and like himself. (I can hear my Sam now: "Duh, Mom, who do you *think* he's gonna look like?!) And then more pics in the gallery, showing how hard you've been working, Simon, and graced by a sunny shot of the energy-exuding Miriam.

    Thank you, again, for sharing. We are with you all the time in our thoughts.

    Marta, Paul, Sam

    Monday, April 26, 2004 -- 22:06:08 (EDT)
    Name: Julie -- Email:
    Location: Toronto, Canada
  • Love to all of you - we think of you every day and look for good news like help from the pain pump. Aunt Julie

    Monday, April 26, 2004 -- 21:49:48 (EDT)
    Name: Kris Hopkins -- Email:
    Location: Clinton, NY
  • So glad the pain pump seems to be having an effect -- nice to be able to be more alert, less irritable, *and* more comfortable. Nice to have a little more sense of control, too, I'd imagine -- pushing the button only when you need to, knowing the extra meds are there when *you* decide they'd help. I've heard it actually cuts down on the overall amount of meds taken, too, which is neat (some doctors and nurses probably worried at first that people would "go overboard" with the pain relief, but apparently not...). Someone invented a really helpful gadget, didn't they?!

    We'll keep thinking about you and wishing you easier nights and pleasant, Bionicle-filled days! Love,

    Kris and Family

    Monday, April 26, 2004 -- 14:11:22 (EDT)
    Name: Karen Zaruba -- Email:
    Location: Ann Arbor,
  • Simon, my son Kirk is a big Bionicle fan, too. His Dad and I have trouble keeping all the names straight--guess we need to watch "Mask of Light" a few more times to help us out.

    Monday, April 26, 2004 -- 11:15:56 (EDT)
    Name: Claire Weiner -- Email:
  • Dear Mary and Markus,
    Your family continues to be in my thoughts and prayers. Claire

    Sunday, April 25, 2004 -- 22:32:33 (EDT)
    Name: Rachel Obstfeld -- Email:
    Location: Irvine, CA
  • Hi Simon! I hope that you are feeling better. I really miss you. Hope to see you soon.
    Love, Rachel

    Sunday, April 25, 2004 -- 20:32:15 (EDT)
    Name: Hoetker Family -- Email:
    Location: Champaign, IL USA
  • Hi again, Simon and family,

    Just letting you know that even though we don't write often we're checking for updates several times a day and thinking about you all the time. Hang tough, everyone!

    -Nancy, Glenn, Andrew &amp Nicole

    Sunday, April 25, 2004 -- 16:27:36 (EDT)
    Name: James Steward -- Email:
    Location: Ann Arbor, MI
  • Hi Simon!

    It's been a long time since we've seen you...but Jay and I often think about you and Miriam and your Mom and Dad. Spring is at last coming to Ann Arbor--lots of pretty daffodils in bloom! We have a new puppy for you to visit with when you come--her name is Addie, and she's a little terrier. Unlike your old friend Percy! You probably don't remember when you were just a baby and Percy knocked you down, he was so eager to play with you! Well, Addie won't knock you down, but she'd love to play with you too--and she's a great licker! She's here whenever you're ready!

    Love, James

    Sunday, April 25, 2004 -- 02:05:24 (EDT)
    Name: Mary Craig -- Email:
    Location: Salt Lake City, UT USA
  • Thanks to everyone for checking up on us and posting messages (or not). A special thanks to Annette for mailing my cell phone charger from Oakland...

    Simon is sleeping quite peacefully tonight. He stirred a little earlier, but he settled back in. This is the second night on the pain pump, and we see good results--he's more alert, less irritable, and seems to be in less pain. He just hates to be hooked up to the thing. We hope he'll grow more used to it.


    Sunday, April 25, 2004 -- 00:45:00 (EDT)
    Name: a, s, r and kofi
    Location: oakland,
  • Simon,

    Sure hope you get a good night sleep tonight I know that always makes everything a bit easier. We miss you here, been eating the left-over lemon jello. Rowan figured out that he could pretend he had a glass of white wine and then shock grown ups by turning it upside down - magic - no spill. Hope you are getting to see some pretty spring flowers. Love, oakland williams

    Friday, April 23, 2004 -- 22:38:03 (EDT)
    Name: Grandpa Gene and Grandma Gail Sweet -- Email:
    Location: Ashland, ohio U.S.A.
  • Praying For Simon and strength for his family. If possible if you are still coming to Oberlin Chris and Myra , kids, and Gene and i would like to get together with you. My no. is 419-207-9982. We hate to hear Simon is in pain, pray it can be controlled with meds. We need to have that coffee in the morning, also. we miss Angel Luke so much i't still seems like a nitemare , but you know it not. Mary from Chris and Myra you sound like a very special person. I also know about being out or missing meds. myself. Please give both of the children a gentle hug and kiss on the cheek from us. Sweet Hugs from The Sweets xxx&ampooo

    Friday, April 23, 2004 -- 21:14:48 (EDT)
    Name: PAT NEWTON(LEXY'S NANA) -- Email:
    Location: NEDERLAND, TX

    Friday, April 23, 2004 -- 21:10:21 (EDT)
    Name: PAT NEWTON (LEXY'S NANA) -- Email:
    Location: NEDERLAND, TX

    Friday, April 23, 2004 -- 10:37:58 (EDT)
    Name: Kay, Kirk, Heather &amp Tyler -- Email:
    Location: Park City, UT
  • We are all thinking the best healing &amp happy thoughts your way today to Simon &amp the whole family! We have a new six week old kitten (Heather says, "no seven weeks mom!")His name is Jasper &amp he is fun to watch play just like your kitties must be! We miss seeing you at church! hugs from Park City!

    Friday, April 23, 2004 -- 08:16:48 (EDT)
    Name: Rebecca, Randy, Emma &amp Schuyler
    Location: Oberlin,
  • Hi Simon,

    Randy saw your grampa yesterday, who reminded us of how quickly things can change! We are now 10 days behind on reading your webpage(partly because I cut my leg last weekend &amp had to have 14 stitches! ) Gosh, you have been through a lot in 10 days. When I read about your radiation treatments, I was crying, then cheering! You are AMAZING!! I think you are so brave and sweet, I wish I could hug you right now and tell you in person.

    So we just want to send you our deep love, powerfully healthy vibes, and our hope and prayers, dear Simon and family. The way you are all loving each other through this is truly an inspiration - literally, filling us all with spirit.

    Rebecca &amp crew

    ps. from Schuyler: I'm really sorry because of your cancer and I hope you have a very good day today. I miss you. I think you're very brave!

    Friday, April 23, 2004 -- 06:04:37 (EDT)
    Name: LeeWilliams
  • Simon - am thinking of you and hoping that pain and swelling will get better. Am so glad that your grann can be there to help. Lots of Love, Lee

    Thursday, April 22, 2004 -- 23:25:18 (EDT)
    Name: Kris Hopkins -- Email:
    Location: Clinton, NY
  • Go, Simon! Go, temazolomide! Stay strong, platelets! (That's going to be our new cheer for you for this next round of treatments -- just imagine us waiving our pom-poms and jumping around like cheerleaders!)

    I'm glad the pain has subsided a bit and that you're able to feel more like your old self again, Simon, enjoying puzzles and Bionicles, etc. I'll bet that feels good. I'm sure it's a frustration, though, that there doesn't yet seem to be a "magic" treatment that will clear away the cancer cells without causing nasty side-effects. But you're so brave about trying each new thing and being hopeful about the results. All of you are such wonderful role models for the rest of us!

    And Miriam, I'll bet you weren't too pleased with that croupy, barky cough you had! But it sounds as though your very expert parents knew just what to do and that you're now on the mend. And how impressive it is that you, too, know how to take medicines like a champ! Way to go.

    We continue to think about all of you and to wish you strength and courage and lots of hope. Love, Kris and family

    Thursday, April 22, 2004 -- 14:48:04 (EDT)
    Name: Madi, Lexi, Lawrie and Curt
    Location: Seatlle,
  • We are sending you our very intentional pain relieving and tumor shrinking prayers and positive vibes. We love you all and hold you in our thoughts always. We can now vividly picture Markus and Miriam sleeping in that - world's biggest blue chair.

    love Madi, Lexi, Lawrie and Curt

    Thursday, April 22, 2004 -- 13:35:47 (EDT)
    Name: carol longsworth -- Email:
    Location: oberlin,
  • Simon and Family, You were remembered in our prayers at curch Sunday. Everyone wants to send hugs and kisses and a basket full of good wishes. You all have such remarkable patience and courage and we admire you and love you more than you know. When Bob's mother was sick we sang "you Are My Sunshine " to her. Are you familiar with that song? Do you have a favorite song? xxxxxooooo Love, The Longsworths

    Wednesday, April 21, 2004 -- 13:53:55 (EDT)
    Name: anne, tom, and johannes -- Email:
    Location: Northfield, MN USA
  • oh, Simon, you are amazing! What a scary treatment that was, and you are so brave for getting through it. Counting was a great way to do it, and I'm impressed you can do that so well! We miss you and your sister and your mom and dad. Johannes sends a really big wet smacking kiss (he likes giving those a lot these days).

    anne, tom, and johannes

    Tuesday, April 20, 2004 -- 17:19:26 (EDT)
    Name: Annette
    Location: Oakland,
  • Simon, Hope the pain is going away fast. Glad to hear you had less pain last time your Mom wrote. Rowan missed seeing you last trip but are glad you had some time with Steve. We are all thinking of all four of you. Hope Miriam is feeling better. Love you all.

    Monday, April 19, 2004 -- 22:51:12 (EDT)
    Name: Jennifer Sharpe -- Email:
    Location: lyndhurst, ohio usa
  • Hi Simon!! Its been a while since i've written.. but i always check up on the website to see how you're doing! You are SO BRAVE!! i am so proud of you!! :-D!! that treatment sounded so scary, i would've freaked out more than you did, you handled it well and got through it.. thats awesome!! i hope all the new treatments help with the new tumor and especially take away pain!! you are so strong -- stay that way!! you've got a great strong spirit that keeps you going that is unremarkable! :-D! you're in my thoughts and prayers everyday!! we have prayer circle at the end of my youth group on sundays and at the end of my church choir practice on mondays... each time i lift up prayers for you.. i love you simon!!! come back to ohio soon we all miss you!!

    Love Always,
    Jennifer Sharpe

    Monday, April 19, 2004 -- 22:44:26 (EDT)
    Name: Kristin Strah -- Email:
    Location: lyndhurst, oh us
  • *Simon*

    hiiiiiiiiii, its Kristin Strah... one of Jenn Sharpes best friends, i wrote you, the last time, in january... soo i decided that its been a long time &amp i might as well say hiiiiiiiii!!!!!!! i read your page today &amp things sound good... your still upbeat &amp moving, which is a plus!! i hope things are going good for you &amp your family :)
    *you are in my prayers &amp so is your family* -You gotta keep fighting even through the good days &amp bad days, stay strong &amp dont give up- <Keep doing what your doing- stay healthy- have fun- and be YOU>

    ~Love Always Get Well Prayers are with you

    Monday, April 19, 2004 -- 16:06:34 (EDT)
    Name: Marcie Obstfeld -- Email:
    Location: Irvine, CA USA
  • Hello - Just a quick hello to let you know that you are all in our thoughts and prayers. We are hoping for lots of pain relief and answers to speed
    Simon along on the healing path! Perhaps post what Simon is into these days - we would love to send him a little goodie to help cheer him on! Love, Marcie

    Monday, April 19, 2004 -- 08:56:53 (EDT)
    Name: Nancy Daily -- Email:
    Location: Flushing, Mi U.S.A.
  • Mary,
    Just checking in to see how things are going. I am glad that the radiation is starting to work on Simon's pain, praying for continued improvement!

    Sunday, April 18, 2004 -- 22:00:23 (EDT)
    Name: The Burgers -- Email:
    Location: Ithaca, NY
  • Hi Guys,
    Just checking your site before I head off to bed, and wanted to wish you all a very restful sleep and sweet dreams tonight! Sending positive vibes and prayers your way.
    xo Liza, Mike, Jolan and Jenna

    Sunday, April 18, 2004 -- 19:45:43 (EDT)
    Name: Marta, Paul, Sam -- Email:
    Location: Ann Arbor,
  • Hang in there you guys - we are hoping for a great night's sleep for all of you. Miriam, feel better soon!

    Good job on the first day of that difficult treatment, Simon - we hoping the pain subsides fast. It sounds like a lot of really hard work. It was good to read that some "Simonness" was showing, too - what a great kid!

    Thinking of you,
    Marta, Paul, Sam

    Sunday, April 18, 2004 -- 15:54:14 (EDT)
    Name: Gari Stein
  • Hello everyone, sounds like yesterday was a rough one, but Simon braved it out with 4 treatments. It is so generous of you to share all details of treatment and so daunting to read. Thinking of you all always and in all ways sending you prayers of hope and love. Gari

    Sunday, April 18, 2004 -- 12:31:31 (EDT)
    Name: Irene Judmayer
    Location: Linz, Austria
  • Hallo, Simon!

    Du bist ein toller Bub und ich bewundere sehr, mit welchem Mut du dich auf diese neuen Behandlungen einlassen kannst. Ich bin da eine viel größere Angsthäsin als du.
    In Gedanken sind wir alle immer bei dir, vielleicht kannst du dir in diesem Zimmer vorstellen, wer aller an dich denkt? Wobei das wahrscheinlich so viele Leute sind, dass sie in diesem Raum gar keinen Platz hätten.
    Ich wünsche dir, dass dir das blöde Ding hinter deinem Gaumen nicht zu viele Beschwerden verursacht.

    Liebe Grüße, Irene, the unknown far away aunt.

    Saturday, April 17, 2004 -- 23:48:30 (EDT)
    Name: Kris Hopkins -- Email:
    Location: Clinton, NY
  • It's been quite a while since I've been able to check in, and boy was there a lot to get caught up on! Simon, you must feel *so* proud of yourself that you were able to get through that really nerve-wracking introduction to the new radiation treatment and to find a way of coping. That counting idea was a *very* good thought!

    Sometimes it's really hard when we don't feel in control of a situation, isn't it? WE want to be the ones to say how things will go, and how long they'll take, and all the rest. It can sometimes make us feel frustrated or angry or even scared when it feels as though we're *not* in control.... But you did a really super job of figuring out a way of calming yourself down and doing what you needed to do. Wow. Very impressive!

    We join all of you in hoping that the radiation will help to shrink the growths and lessen the pain so you can think about some new next steps. We also join you in hoping that some good treatment alternatives will present themselves when you're ready for them.

    In the meantime, we're thinking and praying and dancing for *all* of you and sending warmest wishes from Upstate New York! -- Kris, et al.

    Saturday, April 17, 2004 -- 22:57:42 (EDT)
    Name: amy -- Email:
    Location: ann arbor, mi
  • Simon,
    You brave, brave boy to keep up with the radiation after the difficult start. I know that when nearly-7-year old boys don't want to do something, they DON'T WANT TO DO IT!!!!! But you did it anyway and I hope you will get quick relief from your pain. Know that there are so many people hoping you'll get comfortable soon!

    Saturday, April 17, 2004 -- 12:19:53 (EDT)
    Name: The Street and Roof Cat -- Email:
    Location: Oelbronn, Germany
  • Von Moerike stammt das folgende Gedicht!

    In ihm sei's begonnen,
    der Monde und Sonnen,
    der alles regiert.
    Du Vater, Du rate!
    Lenke Du und wende,
    Herr, Dir in die Hände
    sei Anfang und Ende,
    sei alles gelegt!

    Gott schütze Dich, kleiner Simon!
    Und Euch - Mary und Markus samt Schwesterchen!

    Heidi und Heinz

    Saturday, April 17, 2004 -- 11:54:23 (EDT)
    Name: Jane Bishop -- Email:
    Location: Ann Arbor, MI
  • Hi Simon and Miriam,
    I was lucky yesterday to spend some time with Grandma Ann in Oberlin before my meeting for reunion. She caught me up to date on your to San francisco and one to Austria. You folks sure do get your air miles. Next time, Miriam, Simon will go with you and what fun you will have. From what I can translate from Irene's note, you can be 2 "vacuum cleaners" with the eggs (omelet?)at breakfast! By that time maybe the jaw
    pain will all be gone, Simon. Let's hope so! And good luck with your new deserve every bit!
    Love to all, Jane

    Saturday, April 17, 2004 -- 11:50:23 (EDT)
    Name: Kim Mease~Michaela's MOM -- Email:
    Location: Lancaster, Pa USA
  • Hi Simon and Mary! I hate that you're pain has increased, it really isn't fair is it? Stay strong and I know you'll be feeling better soon! Thanks to you, Michaela, her dad, and I all enjoy reading Captain Underpants books and spend lots of time in the clinic getting lost in his funny adventures! Stay strong and God Bless!

    Friday, April 16, 2004 -- 19:54:06 (EDT)
    Name: Lee Williams
  • Sorry to hear about the pain and the need for a start on new treatment - am thinking of you and hope it goes well. Am so glad you were able to stay at Steve and Annette's when in SF. Love, Lee

    Friday, April 16, 2004 -- 19:36:42 (EDT)
    Name: amy -- Email:
    Location: ann arbor, mi
  • So sorry to hear about the onset of pain and continuing disease. We've been doing the apoptosis dance and will now do the radiation/end pain dance. We finally have a beautiful day in ann arbor. I'm sending Mary a copy of a book that just came out--Ann Arbor Writes--with essays by Laz and Sam--I thought of you as soon as I saw it on sale at the Library, which I know was your home away from home (when the hospital wasn't filling that role). Best to all--

    Amy Sheon

    Friday, April 16, 2004 -- 16:43:26 (EDT)
    Name: Anne -- Email:
    Location: Northfield, MN USA
  • Hi Simon and Miriam and Mary and Markus!

    We're glad that your counts are good Simon, but man we are so sorry that you are in pain. I'm hoping that the new treatment helps that, too, so you can go back to enjoying things. JOhannes sends a big hug (he's really good at that right now), and we all send happy non-hurting thoughts. all our love,

    anne, tom, and johannes

    Friday, April 16, 2004 -- 14:27:59 (EDT)
    Name: Marta, Paul, Sam -- Email:
    Location: Ann Arbor,
  • Dear Simon,

    We feel so much affection and admiration for you, and putting our selves in your shoes we are glad you are back home with your Mom and your Dad and your beautiful sister. (Did you know Miriam is beautiful? We are not sure if that is the kind of thing a brother knows . . . Does she know that you are brave and handsome? We think she probably does know that.) And, of course, Sam and Simon-the-cat. Today is Friday, so you are starting that radiation treatment which we really really hope helps with the pain. There are a lot of things to hate about pain - one thing I hate is that it takes over. When it goes away you can forget about it, but when it hurts it is just the main thing. We hope the pain does not stay the main thing, so you can think about other things. The main thing we are thinking about it you. Keep up the good work, Simon, and tell your Mom thanks for still getting out the news to us readers.

    Love and thoughts for all,
    Marta, Paul, Sam

    Friday, April 16, 2004 -- 11:01:23 (EDT)
    Name: Carol Knox -- Email:
    Location: Chelsea, MI USA
  • Hi! Sorry to hear that there are new sore spots. I'm sending my best thoughts your way. I don't know if Simon has had radiation before, but when Andrew was getting his head "done" for the chloroma's we found a certain technique helpful and I thought I'd pass it along. We took a tape that I had made for the kids when they were little that had lullabys and stories on it. We used that as a time measurement device. We would play the tape while he had his treatments and he knew that when it got to a certain part it would be done. It helped him keep time and gave him something to do other than stare at the big machine. Best of luck!!

    Thursday, April 15, 2004 -- 08:54:32 (EDT)
    Name: Irene Judmayer
    Location: Linz, Austria
  • Hi, Miriam!
    Ich habe mich sehr gefreut, dich bei deinem Urlaub in Linz kennen zu lernen. Du bist ein tolles Mädchen, mit ganz viel guter Energie.
    Übrigens habe ich in der anschließenden Nacht geträumt, dass du einen riesigen Berg gekochter Eier zum Frühstück gegessen hast. Wie ein Staubsauger bist du durch den Eierberg gesaust. Aber dein Bäuchlein ist nicht größer geworden. Wo diese vielen Eier dann hingekommen sind? Keine Ahnung. Fällt dir veilleicht was dazu ein?

    Irene (Grüße auch an deine wunderbare Familie)

    Wednesday, April 14, 2004 -- 14:36:06 (EDT)
    Name: Katrina Zook -- Email:
    Location: Laramie, WY USA
  • Hello Vodoseks!
    Great news about your numbers Simon. They made my day! I marvel at your fortitude (all of you) and am amazed at your bravery. You are a special little boy. Keep up the good work! Katrina Zook

    Wednesday, April 14, 2004 -- 01:13:43 (EDT)
    Name: Ellen Hanson -- Email:
    Location: Cape Cod, Ma USA
  • Hi Mary and Simon, your site is amazing. How do you find the time. Thanks for keeping us up to date. Continued prayers and Best Wishes! Ellen, Seans Mom

    Tuesday, April 13, 2004 -- 12:22:07 (EDT)
    Name: Mary Craig
  • Thanks to my computer buddies at Michigan, the new files are uploaded and you can go to WHAT'S HAPPENING now for the latest.--Mary

    Tuesday, April 13, 2004 -- 11:03:37 (EDT)
    Name: Mary Craig -- Email:
    Location: Oakland, CA (for now) USA
  • Hi everyone!

    We are experiencing a very annoying connectivity problem here in California. Apparently the server back in Michigan won't take my upload from a "foreign" network. So, I wrote you an update, tried to upload it, but all I got was a wiped out former file and NOTHING.

    I'm still trying to find a way to fix it, but so far, I'm stuck.

    We are fine. Simon and I are at Steve, Annette, and Rowan's in Oakland. Our 3-day itinerary at UCSF Children's started yesterday. Today is a bone marrow aspirate/biopsy, and Simon is eating lemon jello and watching Cartoon Network to get him through the morning without food.

    By sometime Wednesday afternoon, we should have results from his tests and know if we are continuing on CEP-701 or moving onto a different treatment idea.

    I hope I can figure out how to get into the server. If not, I'll keep writing here until we get home, OK?


    Tuesday, April 13, 2004 -- 01:35:24 (EDT)
    Name: erik
    Location: davidsonville, md
  • Hi Simon,

    Earlier today, both Erickson and Sarah asked me how you were doing. Since it had been a week or so since I'd visited your web site, I suggested we look this (last) evening.... Well, one thing led to another and we didn't get home until very late so we didn't have time to "check in"... When I did check just now, the 'news' page is blank! Yikes! I checked the message board and there are several 'yahoo's' which I'm figgerin' makes for good news! Yeah from maryland if that's the case!

    As usual, you and the family were included in their nightime prayers.

    Grace and Peace,

    Monday, April 12, 2004 -- 15:41:06 (EDT)
    Name: Madi, Lexi, Lawrie and Curt
    Location: Seattle, Wa
  • Yahoo!!!! Boy is that great news to hear about "unchanged"! Madi and Lexi have been doing lots of Hip, Hip, Horaays! in our house hold for various moments that deserve honor and celebration but, this tops them all. So let's hear it for APOPTOSIS - hip, hip, horaay!

    I love that I can now truly picture you sitting by your fire place on a rainy day in that lovely space of yours. It was so good to be with you all - brief as it was - you provided us all with gracious hospitality and fun right in the midst. --thank you!

    Our thoughts and prayers stay with you always.

    Love, Madi, Lexi, Lawrie and Curt

    Saturday, April 10, 2004 -- 14:31:44 (EDT)
    Name: anne -- Email:
    Location: Northfield, MN USA
  • yahoooooooooo! So glad that the results from the latest scan are good. I also like the apoptosis theory, and it's such a fun word to say, especially if you don't know how to pronounce it. The possibilities are endless a pop to sis, a pop toesies etc...... I'm sorry about the headache simon, and that you have to take more medicine, but I'm glad that it's working!

    lots of love from anne, tom, and johannes

    Saturday, April 10, 2004 -- 12:26:30 (EDT)
    Name: Irene Judmayer
    Location: Linz, Austria
  • Lieber Markus!
    Da mein Mail derzeit nicht funktioniert und ich eure Telefonnumer nur dort gespeichert habe, nutze ich Simons Message Board: Wo seid ihr derzeit erreichbar?


    Friday, April 09, 2004 -- 19:55:29 (EDT)
    Name: Brian -- Email:
    Location: SLC, UT
  • Simon,
    After talking to your mom earlier this week and seeing your smiling face around school, I figured your results would show good news. Congratulations, big guy!

    P.S. Have you seen the new trading card game called "Dueling Masters" (i think that's what it is called)? My boys were curious, because they know you like Pokemon...

    See you in about a week!

    Friday, April 09, 2004 -- 13:52:58 (EDT)
    Name: Marta, Paul, Sam -- Email:
    Location: Ann Arbor,
  • Woow-hah! (You have to say that with a kind of embarrassing cowboy yelp that conveys enthusiasm.) You may *hate* the medicine, Simon, but we are liking it because we like your test numbers and we like the apoptosis theory (even though we didn't know that word - we did some research about it and learned a lot about cells!).

    Have a Happy Easter!
    Marta, Paul, Sam

    Monday, April 05, 2004 -- 16:21:45 (EDT)
    Name: Marta, Paul &amp Sam -- Email:
    Location: Ann Arbor,
  • Here's a quick "hi" and to say how impressed we are, Simon, with your writing and drawing. Good job! We'll be staying tuned for the latest numbers from your tests and watching to see if the bad tasting medicine does good things for your body. It should - I've noticed that the best tasting food seems to be bad for people, you know, ice cream, cookies, etc. Maybe it can work in reverse, too!

    Good vibes from Michigan,
    Marta, Paul, Sam

    Monday, April 05, 2004 -- 05:44:58 (EDT)
    Name: Gerda Faulhammer -- Email:
    Location: Vienna, Austria
  • Lieber Simon, liebe Fam. Vodosek-Craig!
    Wir haben wieder ein hübsches Foto von Simon hier entdeckt und nehmen daraus, dass es ihm so gut geht, wie er aussieht?! Wir wünschen uns das auf jeden Fall und drücken Euch die Daumen, dass Ihr alles weiterhin so gut schafft. Wir und der - österreichische Osterhase wünschen Euch allen ein Frohes Osterfest und senden ganz liebe Grüße aus Wien nach Salt Lake City!

    Sunday, April 04, 2004 -- 22:14:12 (EDT)
    Name: paula cummins -- Email:
    Location: ann arbor, MI
  • hello Simon and gang,
    we miss seeing you and your sister around the sandbox. you look great captain underpants! are you enjoying your home? we are doing well and family housing is beginning to stir after another long winter. we have a baby girl named andi who was born the week of halloween. porter and julia are doing well and we will be moving to columbus oh late june. love jim paula porter julia and andi
    we wish you and your family the best.

    Sunday, April 04, 2004 -- 21:00:47 (EDT)
    Name: Gari Stein
  • Hey Simon, it is so cool to see your letter and artwork. Do you keep a journal? Might be a good time to start one, now that you are writing so well. Haven't been in touch for awhile. Been very busy grandmothering, but thinking you and all your family all the time. Here's a big smooch. MWA!!!!! love Gari

    Thursday, April 01, 2004 -- 16:53:27 (EST)
    Name: Anne -- Email:
    Location: Northfield, MN USA
  • Hi all,

    so glad that you're moving forward with this new trial, and that it seems to be going well. We're glad that you all got time together, and with all of the Williams clan, however briefly. We're sending lots of love and healing thoughts from our little house in Minnesota,

    anne, tom, and johannes

    Thursday, April 01, 2004 -- 10:05:34 (EST)
    Name: Irene Judmayer
    Location: Linz, Austria
  • I can imagine You all being happy to be home again.
    In Linz, the spring ist coming now, after all the weeks of snow (only twelve days ago, everything was white again). Though it really looks nice and clean, I am happy, that birds are singing again, that the sun is blinking through my kitchen window and I don't have a "schlechtes Gewissen", because I don't like any winter sports except figure skating. For an Austrian this seems quite funny.
    So I had a look on Your homepage at Markus and the children running down the snowy hills: Respekt, Respekt, Respekt!

    A thick package of best wishes
    from Irene


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