Tell the Bees

Eating More; More Confused

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.

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‘Touch & Go’ but Cheerful

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.

(click on images for larger version)

Sisters

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‘Not Even Close to Being Out of the Woods’

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.)

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Chloe’s High School Yearbook Photo/Caption

chloe may deleeuw brown

Yearbook Photo“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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click on image for larger version
photo by Lina

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Moriah’s Pre-Dance Party

photo by Chloe

(click on images for larger version)

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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Treatment Not Working; New Approach

I spoke with Lina’s chief transplant MD – Philippe Armand – at Dana-Farber this afternoon.

He said that her multiple issues haven’t really improved or worsened in the past week.

He said the main problem remains the acute graft-versus-host-disease (aGVHD). He says the transplant team is “surprised and concerned” that the aGVHD hasn’t responded to 2 weeks of steroid treatment. It is the aGVHD which has caused her gastro-intestinal system to stop working.

They have another possible drug treatment which they will ‘probably’ start Lina on tomorrow. He said it’s a similar routine as chemotherapy – give the drug via IV for a day then take a week off and repeat several times. He said it could take weeks for any improvement if she responds to this treatment

It looks pretty clear that Lina won’t be home for Chloe’s high school graduation – June 8th. Moriah has her 7th grade ‘Semi-Formal’ dance Friday night so we won’t be back in Boston before Saturday.

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Weekend Report: Not Much Change

It’s another Monday night and my girls and I are back at home. Tomorrow it will be three weeks since I brought Lina to the emergency room at Brigham & Womens to be admitted.

When we arrived Friday night I was surprised Lina didn’t still have the feeding tube down her nostril. She told me that she was getting ready for a trip to Europe and couldn’t travel with that thing hanging out of her nose. She apparently had ripped it out several times. So… on Friday the docs had installed an intra venal feeding tube into her arm and had heavily taped it in place.

Also on Friday she underwent a series of tests including another MRI. They told me that the results won’t be back for most of the tests until Tuesday. But she did test positive for the HHV-6 virus in her brain
(see: http://www.hhv-6foundation.org/hhv6_transplant.html) . It’s a herpes-family virus that we all have but it usually lies dormant. Transplant patients often develop it. They began treating it Saturday.

Lina still isn’t eating. She still has the diarrhea and vomiting. Her open wound on her back is still raw and painful. And she is still confused. Not 100% confused – she can maintain a reasonable conversation but drifts off into fantasy world. The doc Saturday asked her what year it was – she said, “Why are you asking me such stupid questions? It’s 1987”. What month? “Late October or early November.” The nurse said “We’re not sure where she is but she sure is having a good time there.”

Starting last Thursday night, they have put Lina under constant guard. A nurse or a CNA sits at her bedside 24/7 to make sure she doesn’t rip out anything or try to get out of bed again

Lina’s good friend Mary Carey and her husband John drove up to Boston from NYC to visit Friday and Saturday. It was good for Lina.

I’ll write more after getting a report from her chief doctor at Dana-Farber tomorrow.

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‘One Step Forward, Two Steps Back’

Thursday night –

‘One Step Forward, Two Steps Back.’ That’s how Lina’s doctor summarized this week.

Last week he had said ‘Two Steps Forward, One Step Back’.

I spoke with him for awhile this afternoon. He says that she has multiple issues going on – none of which are that serious but in combination they are concerned about her condition. He said they consider Lina to be in ‘unstable condition’ today.

They finally put a feeding tube in tonight – down her nose into her stomach.

For the past couple days she has had ‘mental confusion’ which has been pretty obvious to those of us who have spoken via phone. Friday they are going to do a series of brain tests to see what’s going on.

Her back wound – which happened when she fell last Saturday – has gotten worse. They had covered it with gauze using tape that Lina is allergic to. And so the wound grew to the area where the tape had been applied. Because she’s on heavy dosage of steroids (trying to beat back the aGVHD) – the wound isn’t healing. They are worried about infection so they have her wrapped in a body wound thing that they would use on burn patients.

Tomorrow my girls and I will go back to Boston for the weekend.

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Complications: Slow Progress…I Think

Now it’s again a Monday night and Chloe, Mo & I are just back home in Maine from another weekend in Boston.

Lina is still struggling trying to figure out how to eat again. It’s been over 2 weeks since she’s successfully eaten anything more than a tablespoon of jello. She had a small box of Cheerios earlier today. The docs still think it’s the aGVHD that has messed up her GI system – and they told me today that they see slow improvements and are hopeful that Lina will be able to come home at the end of the week.

Lina is still sleeping a lot but doesn’t have the painful cramps of the past 2 weeks. Saturday morning she broke the rules again by getting out of bed; setting off the bed alarm and then falling again – badly scraping her back. They just can’t keep this girl tied down.

Tonight, former-Portland Sea Dogs pitcher Jon Lester pitched a no-hitter for the Boston Red Sox. Two years ago — during Lina’s 1st stem cell transplant at Dana-Farber — Chloe, Mo and I sat in the Green Monster seats at Fenway Park and watched Jon’s major league debut. Two months later he was diagnosed with the same lymphoma that Lina has. And he was treated at Dana-Farber at the same time Lina was being treated there in Aug-Sept 2006 for her recurrence.

Lina reports that the Dana-Farber nurses watched tonight’s game’s final outs and were crying in joy in Tower 4C.

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Complications: More of the Same

Thursday Night –

Lina is still at Brigham & Women’s hospital and will be at least into next week.

I spoke with her transplant doctor tonight and he told me that his team was ‘perplexed’ at why Lina’s condition hasn’t improved all week. She still can’t eat and is very weak. He said that her ‘chemistry’ i.e. blood counts etc had all been improving over the past week – but not her overall condition. They are going to ‘adjust’ her medications and begin other tests to ‘see if there anything else going on’ besides the aGVHD – which they say seems to be under control.

Tomorrow is Chloe’s last day of classes in her senior year, and Moriah has lacrosse games tomorrow and Saturday. We’ll be in Boston probably Saturday-Monday.

Tonight I tried calling and a confused new patient answered Lina’s phone extension. Turns out they had moved her 6 floors down into a new room – from a ‘regular’ room into the Dana-Farber stem cell transplant unit… you’d think they’d let me know. I tried calling the new room; a nurse told me she was in a deep sleep and had slept all day.

I hope they moved all the great art work our good friend Abigail Norman had put up in her old room.

Lina’s new room:
Tower 4C – Room 54
Brigham & Women’s Hospital
75 Francis Street
Boston, MA 02115

New Direct Room Phone #: 617-525-7884

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