Tell the Bees

Lina’s Obituary was featured on Common Dreams’ website today here:

It also ran in the Portland (ME) Press Herald: here. And it will run in the Huntingdon, PA Daily News this week.

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.

And so…

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.

love,
Craig

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,

Much love,
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.

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:

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 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.
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 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.

The brain virus Lina has been battling for over a month is now gone. They completed the treatment for it on Sunday – but in testing for the brain virus they found two new blood viruses to deal with. Dr. Armand said that they are surprised because the treatment for the brain virus should have also knocked down these new ones.  So they are beginning a new round of different antibiotics. So far, Lina has shown no signs of fever or other sickness from the new viruses.

She is eating and digesting well enough now that they discontinued the intravenous feeding Saturday. But her need for 24-hour ‘guards’ continues.

Dr. Armand said the issue of possibly moving Lina out of Brigham & Women’s hospital is now moot for the next few weeks as she will clearly need continued ‘acute care’ to deal with the new viruses. She had surgery today to remove all of her implanted ‘mediports’ and ‘pic lines’ that feed catheters to her veins and heart. They felt the plastic could be aiding in the growth of the new viruses.

Lina’s mental confusion continues but she’s talkative. She tells us she’s been to many performances around Boston this week. She’s been to South America and Malaysia to adopt 6-12 orphaned children and to the San Diego Zoo to adopt two panda bears who were homeless because of the fires. “And the pandas are almost as cute as the kids. Wait ’til you see them!,” she keeps telling us.

My girls and I came home exhausted last night and we’re not sure when we’ll head back down. Seven of 8 weekends in a row in Boston hotels gets hard on all of us. We may go down for just one night this weekend. We got away from the hospital for a few hours and baked in the sun Saturday at Fenway Park – watching the Red Sox lose to St. Louis, 9-3.

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It’s another Thursday afternoon. I haven’t done a very good job of updating this week and I apologize for all the unanswered e-mails and unreturned phone calls.

Lina is still being fed intravenously and under 24/7 guard.

But… she is eating more every day and her digestive system seems to be sort of working again – no vomiting.  We watched her eat half of a pepper & onion omelet Sunday morning. Dr. Armand told me yesterday if she keeps eating they may take her off the intravenous feeding sometime next week.

They are still treating her HHV-6 brain virus but expect that treatment to end in the next few days.

Dr. Armand said that only a handful of stem cell transplant patients have had HHV-6 at Dana-Farber since they realized how it affects transplant patients – and that there’s not enough history to predict how it will it impact Lina – especially since she’s had so much brain trauma in the last couple years with brain tumors, brain surgery and whole-brain radiation — plus 2 years of non-stop morphine and brain chemo.

At this point her mental confusion seems to be worsening – even while her physical condition has shown some improvement.

I was called by the hospital twice yesterday asking me to call Lina’s room and try to calm her down – ‘try to bring her back to reality.’ It’s clear that she is reliving her past life – and merging much of it with the present. Still, she seems mostly happy. Her biggest complaint remains “the bossy nurses who think they can push me around.” She told me she had fun going ‘trick or treating’ in Boston the other night before going to the Boston Garden to watch the second half of the Celtics game. I said, “But it’s not Halloween.” She said, “Of course it’s not. That’s why it’s so much fun. You catch everyone off-guard.”

Dr. Armand says he’s now less confident that the mental ‘confusion’ will go away then he was a few weeks ago – but that they just don’t know.

Because they are approaching the point where they may take her off of intravenous feeding and end the brain virus treatment Dana-Farber is warning me that we may soon reach the point where the insurance company refuses to pay for more ‘acute care.’  So… they tell me to start thinking about where to move Lina to – a nursing home, a rehab hospital or home? Boston or Maine?

Dr Armand is clear that Lina will need 24/7 care indefinitely – even if she stabilizes. And that her aGVHD is still ‘touch and go’ and could quickly put her back at Dana-Farber/Brigham & Women’s.

So, lots for us – or me, I guess -  to figure out.

Chloe, Moriah and I will go back to the Cambridge Marriott Saturday AM -Monday PM. We have Red Sox tickets for a 4pm Saturday game to get us out our Boston hotel room rut after 6 mostly-rainy weekends. Our good friend Jean Millen is coming to Boston from Arizona Sunday and will visit Lina while she’s in town for a conference next week.

I’ll try to update again from Boston this weekend.

It’s Thursday morning and, because of Chloe’s high school graduation, we haven’t visited Lina in 10 days. But, in our absence, many of you have traveled to Boston to visit with her and we really appreciate it.

Last night I called Lina’s main Dana-Farber doc, Dr. Armand, for advice on how to report her condition to you all. He said that there’s not much change in the past week. Except… that her back was finally healing; her “gut is quiet”; her diet options have expanded to include eggs, waffles, tuna and coffee. And she is eating some of it — ‘very little’ — but some.

Lina is still being fed intravenously and, still has her 24/7 ‘sitters’ guarding her.

But, as he did last week, Dr. Armand said while there’s been some progress – he didn’t want to make it sound like she was doing well. He said, “Lina’s condition remains very delicate. She’s very weak – she’s touch & go and because of the acute Graft vs Host Disease (aGVHC) she could take a sudden turn for the worse at any moment.”

Lina’s mental confusion remains. But she is still cheerful and having ‘wonderful’ adventures. This week she told me of trips to Italy, Texas and Barcelona. And, of her Ob/Gyn appointment this week in Maine to test for pregnancy – “too bad, it’s a negative,” she said.

Chloe, Moriah and I will again spend Friday-Sunday in Boston.

Chloe’s graduation from Cape Elizabeth High School was last Sunday afternoon. Her grandmother, Evelyn DeLeeuw, and her aunt and uncle, Priscilla and Bob Barrowclough flew up from New Jersey. They rented a car and drove back Monday via Boston to visit Lina and show her the graduation photos. We had a pre-graduation champagne brunch at our house with the DeLeeuw’s and Chloe’s other ‘paternal’ grandmother – my mother Ruth, and my sister Leslie and her family. It was great for Chloe and us.

Chloe has decided to attend the Savannah College of Art & Design – but, with all this going on, will defer for a year – and will plan to start in the fall of 2009. She wants to travel and volunteer. She is hoping to work with Safe Passage (http://www.safepassage.org/) in Guatemala. And she is excited with her summer job: sewing for Ann Veronica (http://www.annveronica.com) here in Cape Elizabeth.

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I talked with Dr. Armand this afternoon and told him I needed to report to Lina’s family and friends on how she’s doing.

He said, “Wellll…I’m glad it’s you and not me.”

He said that there has been slight improvements on all fronts: the acute Graft vs Host Disease (aGVHC), her back wound and her mental confusion. But he said overall he wouldn’t want to leave an impression of too much progress – “She’s not even close to being out of the woods.” He said it’s typical behavior for aGVHC to wax and wane.

The aGVHC remains the major problem. Her stomach and intestines are still not working. Her liver is stressed. The steroid treatment for aGVHC usually takes about 2 weeks to work. It’s now 4 weeks since I brought Lina to the Dana-Farber emergency room – and they started the steroids several days later.

If there’s no major improvement soon – they will begin treating her with Ontak – the drug they use on aGVHC patients who fail to respond to steroid treatment.

Chloe, Moriah and I spent Saturday afternoon-Monday afternoon in Boston. Because of Chloe’s graduation this weekend, we’re not sure when we will get back down. We hope some of you will be able to visit and comfort Lina while we can’t. I spoke with her for a few minutes tonight – she said she spent a wonderful afternoon walking around Boston today with my sister-in-law Rita! (Lina’s still under 24/7 guard and not allowed out of bed – and wonderful Rita is in Chicago.)

chloe may deleeuw brown

“i think that growing up is great. you change all the time, every day, which is fun but it is not only fun, sometimes it is very difficult. i like that you change from the inside and from the outside; the way you look changes, but also your feelings. and everything grows, your hair grows, your eyelashes grow, your nose grows. but it is not good, if everything grows so fast that it hurts.”

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photo by Lina

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