Tell the Bees

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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Chloe, Moriah and I stayed at home Friday night (rather than heading down to Boston) so Moriah could go to her 7th grade ‘Semi-Formal’ dance.

We hosted a pre-dance party for ten 13-year old girls girls so they could get made up and dressed together. They ate a lot of sushi in 2 1/2 hours.

Moriah picked out her dress a couple of weeks ago on a Boston shopping trip in between hospital visits

The dance and post-dance sleepovers were big successes, too, I hear.

Photos by Chloe

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