Tell the Bees

‘Not Even Close to Being Out of the Woods’

I talked with Dr. Armand this afternoon and told him I needed to report to Lina’s family and friends on how she’s doing.

He said, “Wellll…I’m glad it’s you and not me.”

He said that there has been slight improvements on all fronts: the acute Graft vs Host Disease (aGVHC), her back wound and her mental confusion. But he said overall he wouldn’t want to leave an impression of too much progress – “She’s not even close to being out of the woods.” He said it’s typical behavior for aGVHC to wax and wane.

The aGVHC remains the major problem. Her stomach and intestines are still not working. Her liver is stressed. The steroid treatment for aGVHC usually takes about 2 weeks to work. It’s now 4 weeks since I brought Lina to the Dana-Farber emergency room – and they started the steroids several days later.

If there’s no major improvement soon – they will begin treating her with Ontak – the drug they use on aGVHC patients who fail to respond to steroid treatment.

Chloe, Moriah and I spent Saturday afternoon-Monday afternoon in Boston. Because of Chloe’s graduation this weekend, we’re not sure when we will get back down. We hope some of you will be able to visit and comfort Lina while we can’t. I spoke with her for a few minutes tonight – she said she spent a wonderful afternoon walking around Boston today with my sister-in-law Rita! (Lina’s still under 24/7 guard and not allowed out of bed – and wonderful Rita is in Chicago.)


7 Comments so far

  1. Danuta June 4th, 2008 12:24 am

    Dear Craig,

    Thank you so much for the update about Lina (I’ve been checking this site – alternately hopeful/worried, worried/hopeful since your last post)and also the updates regarding the transitions that Moriah and Chloe – both so beautiful – are making.
    I am happy to schedule a visit to Boston on a week day and talk about whatever interests Lina for as long and as much as she cares. However, I’d hate to show up on a day when she has 10 other visitors. Is anyone (Deb, I’m thinking directly of you as the prime organizer so far) willing to help coordinate Boston visits?
    Again, thanks so much for the update – its great to hear from you and please know that you are all constantly in our thoughts and deepest caring.


  2. Priscilla De Leeuw Barrowclough June 4th, 2008 7:29 am

    Craig, Chloe, Moriah,
    We were so happy to hear that Moriah had a good semiformal. Chloe and Moriah are beautiful, and creativly climbing over many extra hills thru difficult paths. Craig ……..your strong heart & soul seems to guide you thru hurdle after hurdle, all our family & relatives are behind you. Lina, we are happy you are holding on to good thoughts like your walk with Rita thru Chicago, life’s battles are far beyond what we can iimagine, We love you all……….Priscilla

  3. harriet barlow June 4th, 2008 10:35 am

    Crazy and impossible as all this is for the family and Lina’s devoted friends, I find it oddly consoling that her unconscious is taking her on walks with dear ones and doing whatever it can to protect her from the reality of this trial. With the remarkable sense of beauty that she has in her essence, the journies that she is taking through her past and “alternative” life must be exquisite. May she find respite there until it is tolerable to return to this conscious plain.



  4. Betsy Gattis June 4th, 2008 10:50 am

    Harriet just put it so well, but I’m also uplifted to know that while Lina is in these woods she is feeling all the loving thoughts and prayers coming her way from the big community of people she has touched and inspired. Craig, thanks for sharing the news and beautiful photos of your girls. There’s lots of love being sent to you all.

  5. Susan Baker June 4th, 2008 9:40 pm

    I came home from work tonight thinking that I would write and ask to have you send photos of the the girls and lo, and behold, there they were!!! I feel such a wonderful connection with you all, as a bee can…. wish I could be (bee?) more of a worker bee for you all.

    Also thinking, like Harriet so eloquently expressed that isn’t it wonderful how our brains work… when the going gets tough, we can switch over to more pleasant realities, and I do believe they are realities for Lina. We will be waiting for her “arrival” when all is better. How are you all holding up? The girls, and you Craig? I know you have to do what you have to do, but do know that we are here for you too!

    Thank you so so so very much for the pix!!! Your days and nights must be so all consumed with your own work, the daily needs of your family, and the worry and love for your wife. Thank you for thinking of us too!

    love, Susan

  6. John Newhouser June 4th, 2008 11:49 pm

    Dear Craig, thank you for the update. I hope that sharing the details of Lina’s condition with this multitude of friends and family who care deeply about all of you somehow strengthens you. I know from the other comments that there are many who are lifting all of you up with prayers & positive thoughts and visualizing peace, comfort and healing. When I spoke to Lina a couple of days ago she was pretty clear that she intended to get through this. I talked to her about Teri coming to cook for her when she comes home and she said she would look forward to that. She sounded good, tired but good.
    Chloe, thank you for sharing your picture and thoughts as you graduate – nicely done. Your announcement was also very nice. We knew immediately that you had designed it. Enjoy your graduation. I know your mom would give anything to be there.
    Moriah, is that you? You are all grown up! We definitely need to share photos more often. You look lovely in your dress and it is pretty clear that you and your friends know how to have fun.
    You are all in our thoughts and prayers everyday.

  7. rita brown June 5th, 2008 9:57 am

    Athough I think Lina may have confused me with Kathy or Leslie I am grateful that she is walking in a wonderful world! If it was really me on that walk I think that we liked Old Ironsides and the swan boats best. I know we also laughed a lot. I am hoping to walk with her “for reals” some day and know if anyone can come out of this – it will be Lina.

    Thank you to everyone who is back there visiting Lina and helping Craig, Chloe and Moriah. Love from Chicago …Rita

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