Tell the Bees

…was featured on our website today:

http://www.commondreams.org/archive/2008/07/21/10498/

It also ran in the Portland Press Herald:

http://www.legacy.com/mainetoday-pressherald/Obituaries.asp?Page=Notice&PersonID=113805340

And it will run in the Huntingdon, PA Daily News this week.

In the midst of the thunder & lightning of a wild thunderstorm, at 5:55pm last night, Lina stopped breathing.

Our house lost power from the storm at 5:57pm - no lights, no telephone, no internet connection until the power came back on at 5:00am this morning. Our cell phones have poor reception at home so we were only able to make a couple of outgoing calls.

And so… our daughters and I filled our house with candlelight and the light of the large full moon over the ocean and the girls and I spent the evening sitting alone with Lina until the funeral home came to remove her body by flashlight. Then we sat at our kitchen table picking out some of our favorite photos which we will be posting here soon.

love, craig

Lina is home and back in our bedroom.

She finally arrived at 7:30 pm last night. She’s in a rent-a-hospital-bed facing the ocean. Chloe bought a large bouquet of Lina’s favorite flowers for her bedside - gladiolas.

Lina hasn’t opened her eyes or been responsive to us since she’s been home. We all talk to her and hope she can hear us and the outside sounds of the crashing surf.

Our wide circle of friends have surrounded us with loads of love, too much food and wonderful flowers. Thanks so much!

The hospice nurses are wonderful and on our case.

We’ll try to keep you all updated,

Much love from Chloe, Moriah and Craig

It’s been a rough few days for Lina and for us.

Lina’s condition has continued to deteriorate throughout the past week. Biopsies confirmed that the aGVHD has returned and is wreaking havoc with her GI system again - causing severe damage to her colon. Friday morning the hospital called to see what time my girls and I would be arriving in Boston. I said between 5 and 6pm. They said that might be too late. So, we rushed down and spent the day and evening holding Lina’s hand and talking to her. Maybe she can hear us but she’s completely unresponsive at this point.

Yesterday, Dr Armand and the whole transplant team met with Chloe, Moriah and I. They were very gentle and kind to us but were very blunt about Lina’s poor prognosis. “We don’t think we are doing her any favors to continue treating her,” they said.

Last night Lina’s brother John and his wife, Terri and daughter Aja arrived in Boston from Texas and we all met with the Dana-Farber team again this afternoon to let them know our decision - that it’s time to bring Lina home.

We are all back in Maine now - 8pm Sunday night.

Monday morning they will remove Lina from all medications, IVs and feeding tubes and bring her home by ambulance. Hospice will start helping later on Monday.

Dr Armand said she might last a day, or a week - but that it was time for her to let go.

My girls and I came home last night after spending Friday, Saturday and Sunday in Boston.

After several weeks of slow but gradual progress, Lina has had a setback over the past few days. The weekend medical team was concerned about lethargy and her not eating and so conducted many tests, scans and probes while we were there.

It’s now Monday afternoon and I just spoke with Dr Armand. He said that there are 3 new areas of concern:

1. Her mental condition has worsened considerably and they don’t know why. They were testing to see if she had a series of ‘mini-strokes’. Or it maybe it’s just overload from all she’s going through.
2. Her gut has flared up causing pain, no appetite, vomiting. He said it’s most likely the aGVHD flaring up again. But it could also be lymphoma. The PET scans ‘lit up’ in her gut region which they would for both lymphoma and aGVHD. They are going to do an endoscopy and a colonoscopy to see what’s going on and get biopsies.
3. Her kidneys are damaged and they don’t know why and are doing various tests to see if the mix of drugs she’s on could be the culprit.

Dr Armand said that while none of these three developments is ‘catastrophic’ - in combination, and in her extremely weakened condition, she is again unstable and has the team ‘very worried’. She doesn’t need her ’sitters’ now because she doesn’t have the strength to get out of bed.

Before this weekend’s setback, the hospital had told me that because she was eating better and because they were nearing the end of treatment for her viruses and the bacteria in her blood that I should expect our insurance company (Anthem/Blue Cross) to refuse anymore acute care. Lina’s patient care coordinator at Brigham & Women’s had contacted over 25 Anthem/Blue Cross eligible rehab hospitals in New England but none of them will accept her because of her mental deterioration and the need for 24/7 nursing care.

She said our options were to move her to a Anthem/Blue Cross eligible nursing home, or, to bring her home and hire our own nursing care. Insurance would cover up to 100 days at a nursing home but pay nothing for home care. We’ve gone without Lina’s salary for these three years and now we’ve gone through all of our savings paying medical expenses not covered by the insurance — so… we can’t pay anything beyond what insurance will pay.

But given those choices, we’ll bring her home and figure out someway to care for her.