Tell the Bees

Archive for May 8th, 2008


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,