Tell the Bees


Dear Friends & Family

It’s now 28 days after Lina’s stem cell transplant: After 3 weeks of mostly calm, deep sleep, Lina had a rough past week.

They told us the first 90 days were the most likely for complications. And we now have complications.

She started having major balance problems last week which resulted in some ugly falls; then GI problems developed; severe diarrhea, cramps, vomiting etc.

Tuesday afternoon, May 6, the transplant team at Dana Farber said come to Boston now! to be admitted so they can evaluate.

Lina and I drove to Boston Tuesday thinking she would be quickly admitted, but – no. We spent all night in the chaotic and depressing emergency room. I could spend an hour here telling our horror story as further proof of how screwed up our health care system is – but I won’t – for now. But it was horrific. So… sick & sleepless Lina, only at 11pm Wednesday, 28 hours later – was moved from the Brigham and Women’s Hospital emergency room to a private room.

The Docs told us early yesterday morning that they at first feared she had come down with acute graft-versus-host-disease. But, because she didn’t have a new rash – it was unlikely. Then, a couple hours later Lina developed a new widespread rash.

Acute graft-versus-host-disease (aGVHD) is the most common, and most serious, complication from mini-allo transplants.

Today they are doing intestinal and liver tissue biopsies to confirm aGVHD, determine it’s ‘stage’ and figure out a treatment plan. They told us that if it’s mild aGVHD she could come home as early as this weekend – if not, we don’t know.

For now, I’m back home with Chloe & Moriah. Lina lost her cell phone while having a blood transfusion last week and didn’t bring her laptop to Boston.

She is in:

Tower 10B – Room 36
Brigham & Women’s Hospital
75 Francis Street
Boston, MA 02115

Direct Room Phone #: 617-732-4682

I’ll update as we know more,



4 Comments so far

  1. Joan May 8th, 2008 6:06 pm

    What a rocky road for you folks….Hoping that things turn around once again.
    Love and healing to you,

  2. julie olsen May 8th, 2008 7:06 pm

    positive thoughts, energy, and love to you all. Julie

  3. natasha mayers May 8th, 2008 9:47 pm

    lina, sending love and energy your way, and tales of the blackflies and fiddleheads and dandelion greens outside, the tulips that are about to open, and the peepers peeping.
    i have to avoid the sun this summer and went to buy a hat at goodwill today, got home, and no hat in the bag. i hate hats.the hat probably knew it would be hated and opted to stay at the store.
    sleep and wake and get strong
    love, natasha

  4. Kathy Edwards May 9th, 2008 3:07 pm

    Joyce told me about your great web site. It’s wonderful how you and Craig are keeping all of your family and friends up-to-date online.

    Okay, enough craziness at the hospital – it’s time you were treated like the queen bee!!

    I’m sending well wishes and only “positive” vibs to you, so that you will soon have the energy to enjoy the long-awaited springtime in Maine.

    My best to you, Craig, Chloe, and Moriah.

    Take care,

    Kathy Edwards

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