Welcome to tellthebees.org.
This chronicle of our campaign to beat back the non-Hodgkins Lymphoma that keeps trying to dominate Lina is ongoing. We’ll keep you up to date with what’s happening with us through this site and we hope to hear back from you – either by commenting here or through a letter, email (firstname.lastname@example.org or email@example.com) or phone call….or the best of all, a visit. ~Lina
UPDATE from Craig: Lina lost this battle and we lost Lina on July 18, 2008.
You’re invited to join us in celebrating the life of Lina Jeanne Newhouser.
Sunday, September 7, 2008 1-3pm at:
The Inn by the Sea
40 Bowery Beach Road
Cape Elizabeth, Maine
We will be outside under a large tent – just across the road from our home.
For out-of-towners – The Inn by the Sea still has rooms available that weekend but is pretty pricey. Downtown Portland is only 6 miles away – the airport 7 miles. For other hotel options click here.
We hope you can make it, Please RSVP – 207-799-2197 or firstname.lastname@example.org
Chloe, Moriah & Craig
From CODEPINK: We are so saddened by the death of Lina Newhouser, but inspired by her amazing life as an artist, a political activist, an organic farmer, a businesswoman a community organizer and a proud, loving mom. She is also the co-founder of Common Dreams, a website that has became an invaluable tool to educate and organize for peace, justice and environmental sustainability.
It is a great honor for us that Lina’s family has asked people to donate to CODEPINK in her name. With input from her family and friends, we will use the funds for a special campaign that will continue Lina’s legacy of nurturing our Common Dreams for a more peaceful world.
click here to make a donation in Lina’s honor:No comments
In the midst of the thunder & lightning of an unusually wild thunderstorm, at 5:55 PM last evening, Lina stopped breathing.
Seconds later, at 5:57 PM, a very close lightning strike caused our house to lose power – no lights, no telephone, no internet connection – until the power was restored at dawn this morning. Our cell phones have poor reception at our home so we were only able to make a couple of outgoing calls.
Our daughters and I lit our house with candlelight as it got dark, and after the storm cleared, the bright light of the huge, low full moon over the ocean out right our windows filled our house. My girls and I spent the evening sitting alone with Lina until the funeral home came to remove her body at 11 PM while I held a flashlight so they could maneuver down the stairs in the dark. Then, Chloe, Moriah and I sat at our kitchen table for most of the night, by candlelight, in shock I suppose, hugging each other and picking out some of our favorite photos which we will be posting here soon.
Lina is home and back in our bedroom.
She finally arrived at 7:30 pm last night after a 100-mile ambulance ride from Boston. 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,
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 me in Maine 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.” We rushed down to Boston and spent the day and night holding Lina’s hand and talking to her. Maybe she can hear us – but she’s completely unresponsive to us at this point.
Saturday, 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 together 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 feeding tubes, and life support – then bring her home to Maine, by ambulance. Hospice will start helping us later on Monday.
Dr Armand said that without feeding and water, Lina might last a day, or a week at most – but that it was time for her to let go.36 comments
I just got back from visiting Lina at Brigham and Women’s. She was resting while listening to the radio. I fussed in her room a bit, hanging up a nice glass peace sign and her many cards.
However, I was thinking it might be nice to send a new round of good wishes in the form of get-well cards. We could cover her whole wall in cheerful greetings from all of us.
Tower 4C – Room 54
Brigham & Women’s Hospital
75 Francis Street
Boston, MA 02115
~ thank you,
Leslie (Craig’s sister)
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 by phone with Dr Armand. He said that there are 3 new areas of concern:
- 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.
- 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 new 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.
- 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 in ‘unstable condition’ and has the team ‘very worried’. She doesn’t need her ‘sitters’ now because she no longer has 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 to pay for anymore ‘acute care.’
Lina’s patient care coordinator at Brigham & Women’s 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 only up to 100 days at a nursing home but pay nothing towards home care. The patient care coordinator contacted over 25 Anthem/Blue Cross eligible rehab hospitals all over New England but none of them will accept her because of her current mental deterioration and her need for 24/7 nursing 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 — we can’t pay anything beyond what insurance will pay.
So… given those choices, when she improves we’ll bring her home and figure out someway to care for her.22 comments