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MESSAGE BOARD Archive April 2004Thank you for visiting! You can click here to add to Simon's Message Board.
Friday, April 30, 2004 -- 23:47:22 (EDT) Name: Mary Craig -- Email: mfcraig@umich.edu Location: Salt Lake City, UT USA 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! --Mary Thursday, April 29, 2004 -- 21:30:59 (EDT) Name: Lippert Family -- Email: conlippert99@yahoo.com Location: Ann Arbor, Michigan USA 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: Hei-und-Hei-F@t-online.de Heinz The Street and Roof Cat Thursday, April 29, 2004 -- 16:27:48 (EDT) Name: The Strett and Roof Cat -- Email: Hei-und-Hei-F@t-online.de Location: Oelbronn, Germany 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: pflynn@lsil.com Location: Wichita, KS USA 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 Patrick Thursday, April 29, 2004 -- 01:17:37 (EDT) Name: annette Location: oakland, 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, us Wednesday, April 28, 2004 -- 08:55:44 (EDT) Name: Steve Robertson -- Email: stevemeg@usfamily.net Location: St. Paul, MN 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: manildi@millercanfield.com Location: Ann Arbor, 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: julie.lautens@sympatico.ca Location: Toronto, Canada Monday, April 26, 2004 -- 21:49:48 (EDT) Name: Kris Hopkins -- Email: khopkins@mail.colgate.edu Location: Clinton, NY 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: kzaruba@umich.edu Location: Ann Arbor, Monday, April 26, 2004 -- 11:15:56 (EDT) Name: Claire Weiner -- Email: cweiner@umich.edu Your family continues to be in my thoughts and prayers. Claire Sunday, April 25, 2004 -- 22:32:33 (EDT) Name: Rachel Obstfeld -- Email: ppimarcie@aol.com Location: Irvine, CA Love, Rachel Sunday, April 25, 2004 -- 20:32:15 (EDT) Name: Hoetker Family -- Email: nhoetker@mac.com Location: Champaign, IL USA 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 & Nicole Sunday, April 25, 2004 -- 16:27:36 (EDT) Name: James Steward -- Email: jsteward@umich.edu Location: Ann Arbor, MI 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: mfcraig@umich.edu Location: Salt Lake City, UT USA 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. --Mary Sunday, April 25, 2004 -- 00:45:00 (EDT) Name: a, s, r and kofi Location: oakland, 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: gailsweet@zoominternet.net Location: Ashland, ohio U.S.A. Friday, April 23, 2004 -- 21:14:48 (EDT) Name: PAT NEWTON(LEXY'S NANA) -- Email: pnewt4@aol.com Location: NEDERLAND, TX <A HREF= "http://www.caringbridge.com/tx/alexiaflory">LEXY'S NEUROBLASTOMA FIGHT</A> Friday, April 23, 2004 -- 21:10:21 (EDT) Name: PAT NEWTON (LEXY'S NANA) -- Email: pnewt4@aol.com Location: NEDERLAND, TX Friday, April 23, 2004 -- 10:37:58 (EDT) Name: Kay, Kirk, Heather & Tyler -- Email: kaybeaton@csi.com Location: Park City, UT Friday, April 23, 2004 -- 08:16:48 (EDT) Name: Rebecca, Randy, Emma & Schuyler Location: Oberlin, 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 & 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 & 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 Thursday, April 22, 2004 -- 23:25:18 (EDT) Name: Kris Hopkins -- Email: khopkins@mail.colgate.edu Location: Clinton, NY 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, love Madi, Lexi, Lawrie and Curt Thursday, April 22, 2004 -- 13:35:47 (EDT) Name: carol longsworth -- Email: carol.longsworth@oberlin.edu Location: oberlin, Wednesday, April 21, 2004 -- 13:53:55 (EDT) Name: anne, tom, and johannes -- Email: doyleyad@stolaf.edu Location: Northfield, MN USA xoxoxo anne, tom, and johannes Tuesday, April 20, 2004 -- 17:19:26 (EDT) Name: Annette Location: Oakland, Monday, April 19, 2004 -- 22:51:12 (EDT) Name: Jennifer Sharpe -- Email: babykiss1222@aol.com Location: lyndhurst, ohio usa Love Always, Jennifer Sharpe Monday, April 19, 2004 -- 22:44:26 (EDT) Name: Kristin Strah -- Email: Sportsangel77@aol.com Location: lyndhurst, oh us 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 & i might as well say hiiiiiiiii!!!!!!! i read your page today & things sound good... your still upbeat & moving, which is a plus!! i hope things are going good for you & your family :) *you are in my prayers & so is your family* -You gotta keep fighting even through the good days & bad days, stay strong & dont give up- <Keep doing what your doing- stay healthy- have fun- and be YOU> ~Love Always Get Well Prayers are with you -KristinStrah- Monday, April 19, 2004 -- 16:06:34 (EDT) Name: Marcie Obstfeld -- Email: ppimarcie@aol.com Location: Irvine, CA USA 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: daily_n@hotmail.com Location: Flushing, Mi U.S.A. 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! Nancy Sunday, April 18, 2004 -- 22:00:23 (EDT) Name: The Burgers -- Email: ltburger@hotmail.com Location: Ithaca, NY 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: manildi@millercanfield.com Location: Ann Arbor, 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 Sunday, April 18, 2004 -- 12:31:31 (EDT) Name: Irene Judmayer Location: Linz, Austria 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: khopkins@mail.colgate.edu Location: Clinton, NY 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: asheon@umich.edu Location: ann arbor, mi 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: Hei-und-Hei-F@t-online.de Location: Oelbronn, Germany 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: jebish@umich.edu Location: Ann Arbor, MI 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 trips...one 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 toy...you deserve every bit! Love to all, Jane Saturday, April 17, 2004 -- 11:50:23 (EDT) Name: Kim Mease~Michaela's MOM -- Email: mssilky@paonline.com Location: Lancaster, Pa USA Friday, April 16, 2004 -- 19:54:06 (EDT) Name: Lee Williams Friday, April 16, 2004 -- 19:36:42 (EDT) Name: amy -- Email: asheon@umich.edu Location: ann arbor, mi Amy Sheon Friday, April 16, 2004 -- 16:43:26 (EDT) Name: Anne -- Email: doyleyad@stolaf.edu Location: Northfield, MN USA 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: manildi@millercanfield.com Location: Ann Arbor, 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: carolknoxmi@mac.com Location: Chelsea, MI USA Thursday, April 15, 2004 -- 08:54:32 (EDT) Name: Irene Judmayer Location: Linz, Austria 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: kzook@uwyo.edu Location: Laramie, WY USA 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: ehanson89@aol.com Location: Cape Cod, Ma USA Tuesday, April 13, 2004 -- 12:22:07 (EDT) Name: Mary Craig Tuesday, April 13, 2004 -- 11:03:37 (EDT) Name: Mary Craig -- Email: mfcraig@umich.edu Location: Oakland, CA (for now) USA 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? --Mary Tuesday, April 13, 2004 -- 01:35:24 (EDT) Name: erik Location: davidsonville, md 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, Erik Monday, April 12, 2004 -- 15:41:06 (EDT) Name: Madi, Lexi, Lawrie and Curt Location: Seattle, Wa 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: doyleyad@stolaf.edu Location: Northfield, MN USA lots of love from anne, tom, and johannes Saturday, April 10, 2004 -- 12:26:30 (EDT) Name: Irene Judmayer Location: Linz, Austria Da mein Mail derzeit nicht funktioniert und ich eure Telefonnumer nur dort gespeichert habe, nutze ich Simons Message Board: Wo seid ihr derzeit erreichbar? Irene Friday, April 09, 2004 -- 19:55:29 (EDT) Name: Brian -- Email: brian.conley@slc.k12.ut.us Location: SLC, UT 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: manildi@millercanfield.com Location: Ann Arbor, Have a Happy Easter! Marta, Paul, Sam Monday, April 05, 2004 -- 16:21:45 (EDT) Name: Marta, Paul & Sam -- Email: manildi@millercanfield.com Location: Ann Arbor, Good vibes from Michigan, Marta, Paul, Sam Monday, April 05, 2004 -- 05:44:58 (EDT) Name: Gerda Faulhammer -- Email: kurt.faulhammer@aon.at Location: Vienna, Austria 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: pjcchubs410@netscape.net Location: ann arbor, MI 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 Thursday, April 01, 2004 -- 16:53:27 (EST) Name: Anne -- Email: doyleyad@stolaf.edu Location: Northfield, MN USA 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, xoxo anne, tom, and johannes Thursday, April 01, 2004 -- 10:05:34 (EST) Name: Irene Judmayer Location: Linz, Austria 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 MESSAGE BOARD Archive
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