Sunday, May 24, 2009

Dear Friends and Family,

This blog is your source of information on Susan's treatment for and recovery from a variant of Chronic Lymphocytic Leukemia (CLL). It will be hosted by me (Jerry Kargman-brother) with editing permission and entries by Bob, Callie, and Charley Siegel as they see fit. Susan, of course, will also have editing permission. Once her recovery is underway, blogging on her own behalf may become her preferred replacement activity for shopping during her confinement of a month or so (more on that below).

My intention at this point is to keep it simple - just the information you need for background and the news you need on how Susan is doing. Background information is in the box below. The news will be in the form of ongoing blog posts. Here is the provisional timetable for upcoming events:

  • May 27: Susan and Bob travel to Dana Farber Cancer Institute (DFCI) in Boston; hospitalization will be at Brigham and Women's Hospital, adjacent to DFCI
  • May 28: Susan begins a 4-day conditioning period of chemotherapy
  • May 31: Last day of conditioning treatments
  • June 1: Recovery Day
  • June 2: Transplant Procedure (this is similar to a blood transfusion, but may take 2 or more hours. It is NOT a surgical procedure.)
  • June 3: Susan is released to a specially prepared, environment controlled apartment (Church Park Apartments, Apartment 702, 255 Massachusetts Ave, Boston, MA 02115)
  • June 4-30: Susan recuperates in apartment with daily trips to DFCI for treatments and monitoring
  • July 1?: Susan cleared to return home, but will require careful monitoring and weekly visits to DFCI.
IMPORTANT NOTE: Unfortunately, Susan can NOT receive gifts of flowers, plants or food. These items may introduce infectious elements which her depleted immune system will not be able to handle.

23 comments:

  1. Susan, I will be watching your progress and hoping things go as easily as possible. I will be thinking of you and hoping to see you during your recuperation.
    Much love,
    Harriet

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  2. Susan,
    We are thinking of you and look forward to seeing you soon up in the country...
    Much love,
    Barb and Peter

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  3. Dear Susan,
    Please thank Callie and Jerry for allowing all of us, thru this blog, to keep up with your progress and communicate with you during your recuperation. David and I often talk about your incredible courage and resilience, which is an extraordinary example for all of us.
    Barb Kenner told me that your country house is totally amazing, and that she is personally moving in to your kitchen! I look forward to the tour.
    Meanwhile, I will be thinking about you and wishing you the best.
    Much love,
    Amy

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  4. Susan & family - Pat and I will be keeping you in our thoughts and prayers. Bon courage.

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  5. This is blog is wonderful, as it is so hard to keep everyone posted and sometimes even though we think of you all the time, we do not want to bother everyone with our calls. Susan, you are so brave and such an inspiration to us all......you have our prayers and we will bewaiting anxiously for updates and hopefully good news! Lot's of love and many blessings
    Kim, David, Siena, and Jacoby

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  6. Dear Susan,
    Eric and I are wishing you a very quick, pain- free recovery. I am thinking of you and wishing you all the best. I plan to see you in July for a overdue wrist/ hand treatment along with much "catching up." I admire your strength and courage as you are a very, very special woman in so many ways.
    Take care and see you soon...With much love,Stacey

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  7. Susan

    The Murray-Maloneys are all with you in our thoughts. And we so appreiciate Jerry wrtiting this blog. As your Boston friends, please know that you and Bob can call on us for anything at anytime.
    Much love
    Georgia

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  8. Susan:
    You are in our hearts and our thoughts, and we are sending you all our POSITIVE ENERGY. Will be following your progress, and hope to be able to deliver get-well wishes in person in Boston soon. Your grace and courage are awe-inspiring...
    Jerry and Callie, thank you so much for creating this blog.
    Much love,
    Susi and Pete

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  9. Thank you, Callie! Thank you, Jerry! Hello, Susan!!
    This blog fills a void of much-desired information and we're very grateful for this way of "being with" you (Susan).
    We're going to be in Boston on Saturday (May 30)for an evening wedding. Is it possible to visit then? We'd love to see you if at all possible!
    Barbara and Will

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  10. Susan: So glad to have this means of keeping track of your treatment and progress, thanks to Jerry and Callie. You and Bob have been incredible powers of example to many of us for a long time now. Your grace and guts are inspirational. Will stay in touch for the next month or so this way and look forward to seeing you back in your ever -more- beautiful- house in the country in July. Much Love, Diana

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  11. Susan - I'm so happy to be able to see your progress without bothering anyone. You are in our thoughts always and we send our best wishes for a quick and flawless recovery.
    XOXOX
    Tami, Rich & Nicholas

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  12. Thank you so much for giving me access to this blog allowing Susan's friends to keep up on her progress. She is a wonderful, inspiring person and I am so glad she has the support of such a loving family. My husband has a close friend who has been through this procedure with remarkable results, and we wish the same success to Susan. An MHC friend, Lorraine

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  13. Susan & Family-
    You have been nothing but hospitable and gracious to us over the years. We wish you the best of luck with your procedure and recovery. Look forward to seeing you in the Berks.
    -The Schodack Girls

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  14. Hi Susan,
    I will be following the blog and thinking of you daily. I'm sending all my love for the journey ahead. I've told Callie already but if there is anything my mother or I can do to make you or your family's life easier, we'll be there. Here's to speedy and easy recovery!
    Love,
    Rachel

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  15. Susan,
    I will be thinking of you in the coming weeks as you make this trying journey. All the best for a successful treatment and speedy recovery.
    Alison

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  16. We love your courage Susan and Bob. Thank you Jerry for always coming through and to Callie and Charley-such supportive children.
    Love,
    Barbara (sister-in-law)

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  17. Janine Ducoin-ArnoldMay 29, 2009 at 4:16 PM

    Dear Susan,
    We have been thinking of you so many times but did not want to bother you or interrupt you with a call. Thank you to your family for this informative blog and the opportunity it gives us to know how you are doing. Fred and I wish you courage (which we know you have plenty of) and only hope that your recovery will be as easy and straightforward as possible.
    We'll celebrate soon the French way,with champagne!
    A bientot!
    Janine & Fred

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  18. Susan, Bob, and family,

    I'm hoping for a successful transplant and speedy recovery.

    Ed Siff

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  19. Hi Susan and Family,
    It's wonderful to have this opportunity to follow your progress. Adam, Hannah and I all are thinking of you Susan and wishing you all the good thoughts that we have. We all missed seeing you at the sedar this year, especially Hannah because of all the fun you contribute. You are in all of our hearts. We'll check into the blog every day.
    Love,
    Patty, Adam and Hannah

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  20. Susan, Bob, Callie, Charlie, and family,
    My father, the "other Robert Siegel" and I "the other Susan Siegel" are thinking of you and praying for your speedy and full recovery. Since my father doesn't have a computer, I wanted to enter a post here especially from him, sending you love and best wishes. We hope you can feel the positive vibes over the internet. Love to all of you. One day at a time. love, Sue Siegel Pouliot and family and Robert Siegel

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  21. Susan:
    Have been thinking of you all day, and will be tomorrow. Wishing for success and a super-speedy recovery. The photos posted to the blog have been great -- the love and energy that surround you radiate right through those masks!
    Love to all,
    Susi

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  22. Hi Susan,
    Well you made it through the first difficult part of your journey. How wonderful. I never had any doubt with the strength and courage you have shown throughout your disease. I only wish you better days ahead.
    Rick sends is love. Can't wait to be able to speak with you. I will call when we get back to Napa next week. Lots of love, gig

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  23. Hi Susan -

    Greetings from FL. I am keeping your uncles updated on everything. We all hope you are getting over the hard part of this process and onto better days.
    You clearly didnt bring the Yankees much luck in Boston....hopefully the Marlins (that's our FL team) will fair better there this week!
    Hope to see you when I am up there in July....

    Love,
    Melissa, Sonny and Nathan

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