Tell the Bees

Now it’s Monday night and Chloe, Mo & I are back home

Lina had a rough weekend but is doing much better tonight. They started treating the aGVHD yesterday with steroids and it seems to have begun to work.

When we left Lina at noon today she was still not feeling well but the team of 5(!) docs who came to check on her at 11am insisted that her rash and condition seemed to be improved.

She ate a baked potato, a smoothie and two bites of an oatmeal cookie tonight - the first solids in 9 days (update: unsuccessful meal). And she says that she feels better - she was even able to watch 2 movies on Moriah’s portable DVD player and part of the Red Sox game tonight.

It’s Saturday night. Chloe, Moriah & I came to Boston today and will stay in the Brookline Courtyard Marriott until Monday.

We spent several hours tonight at the hospital with Lina. The biopsies confirmed today that she has acute graft-versus-host-disease (aGVHD). And she is still having a rough time with its manifestations: vomiting, cramps, diarrhea, rash. Tomorrow, they will begin treating the aGVHD with intravenal steroids.

She had a bad fall today. The nurses thought she may have broken her hip and received a concussion. But x-rays and brain scans were negative. She just has more new pains - and a new bed alarm to let the nurses know when she is trying to get up.

The good news is that Lina’s transplant doctor tells us that if she can ride out the aGVHD without too much treatment it may actually be helpful to the long-term benefits of the stem cell transplant.

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.
(see: http://en.wikipedia.org/wiki/Graft-versus-host_disease)

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,

love,
Craig

Last evening around 6:00, Craig woke me to join him and some friends who were coming to cook and eat dinner with us. He reports that in my half sleep/half awake stupor, I asked him if the Easter bunny had come, and had he hidden eggs? Craig gently reminded me that Easter had come and gone, it was 6 PM on a Saturday evening, and that our friends were arriving soon for dinner. It was a wake up call, literally and figuratively. I needed to wake up to greet our friends for the evening, and I needed to awaken again to the reality of every-day life.

I had literally slept April away. We got home from the transplant on April 10. I took a shower, slid into my own pjs and fell into bed. I was consumed by sleep. For day after day after day. When I woke up, I ate, and then back to sleep. Actually it felt like the right thing to do. The stem cells were doing their work. Each of the two camps seemed to embrace each other in the campaign to create my new xy lifestyle. And they needed me to recharge constantly to feed them.