Tell the Bees

Treatment Not Working; New Approach

I spoke with Lina’s chief transplant MD – Philippe Armand – at Dana-Farber this afternoon.

He said that her multiple issues haven’t really improved or worsened in the past week.

He said the main problem remains the acute graft-versus-host-disease (aGVHD). He says the transplant team is “surprised and concerned” that the aGVHD hasn’t responded to 2 weeks of steroid treatment. It is the aGVHD which has caused her gastro-intestinal system to stop working.

They have another possible drug treatment which they will ‘probably’ start Lina on tomorrow. He said it’s a similar routine as chemotherapy – give the drug via IV for a day then take a week off and repeat several times. He said it could take weeks for any improvement if she responds to this treatment

It looks pretty clear that Lina won’t be home for Chloe’s high school graduation – June 8th. Moriah has her 7th grade ‘Semi-Formal’ dance Friday night so we won’t be back in Boston before Saturday.


7 Comments so far

  1. Joyce Read May 27th, 2008 10:42 pm

    Thanks for the update and the return phone call this afternoon. I’m planning on flying to Boston on Tuesday so in case Lina misses this message, be sure to warn her that “Texas is on the way!”

    Please let me know if there is anything I can do for you and the girls.

  2. Danuta May 28th, 2008 12:01 am

    Dear Craig,

    To paraphrase the words of the inimitable Nina Simone: ‘Lymphoma GODDAM!’
    This has gone on for SO long and is SO cruel most especially now, for you, Lina and the girls, at a time when you want to, as a family, be celebrating graduation and happy transitions but instead have to keep dealing with this uninvited guest who just won’t go away.
    And for you and the girls, unlike Lina, there is no release of the imagination such as planning a trip to Europe or back to 1987.
    On the brighter side, and I trust there is a brighter side as long as her doctors are able to effectively treat Lina and it sounds as if they are, there is the real chance that she will successfully complete this tightrope walk she’s traversing and come home again. And added to that she is such a fighter.
    For now please look after yourself & the girls and let me know if there is anything I can do to help you or Lina.
    What do you need most? Please let me know. I’ll help as best I can. (The flu I’ve been hosting for the past month is finally almost gone so I’m safe again)

    And do take care.
    You are always in my thoughts and have my best wishes, love, energy and will,


  3. moie May 28th, 2008 8:49 am

    Dear Craig,

    We all can’t thank you enough for keeping
    us informed of Lina on this day-to-day basis.

    I can imagine how difficult it is for all of
    you to watch her suffer with all of these
    complications and not to have her at home with
    you. I know it has been an incredibly long and
    frustrating struggle and during it all the four
    of you have been fighting it valiantly.

    Lina, I am willing so hard for you to get
    well again and that your healing be without
    the pain of the last few weeks. Your huge
    circle of friends in pulling for you, all the
    time, every day. We love you, miss you and
    want, most of all, to see you healthy.

    Love, Moie

    Craig, does Lina have a new number at the hospital and
    is she still welcoming phone calls? I tried her
    earlier number, but got no answer and think it may have been changed when she moved to a different room. I’d love to speak to her in person if she’s up to it.

  4. tina harnden May 28th, 2008 2:25 pm

    Craig: Please tell Lina that I send her a truckload of positive energy! I am not a prayerful sort, but pray now daily that she regains her strength and stability very soon, and that you and the girls stay tough and positive. During my own heatlh battle I have read so much about the power of the mind on healing. I strongly believe that Lina is as tough as they come and she can knock this! Lucid or not, she’s fighting; she’ll beat this.
    Lots of love,

  5. julie olsen May 28th, 2008 6:01 pm

    Craig, You, Lina and the girls are in my thoughts on a daily basis.Lots of love, strength and hope,Julie

  6. Mary June 1st, 2008 8:09 pm

    Moriah-so glad I got to see the pictures Chloe took from your semi-formal dance Friday. You are a true beauty. The photo of the girls on the lawn will last forever!

    Lina will love your dress Moriah… I hope you can wear it to Chloe’s graduation next week. Maybe you can play a video of the graduation for your Mom…

    Hats off to Chloe! and of course, Craig and Lina… you did a swell job huh?

    Love ya Mary

  7. Sebastian and family from Germany June 2nd, 2008 3:30 pm

    We send all our good energy over the ocean to you Lina, and are following the news from Craig. Thank you for the continuous updates, Craig. Though we do not dare to call into the hospital, with our thoughts we are with you, Lina!
    All the best to you

Leave a reply