Tell the Bees

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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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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.

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.

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.

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.

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

Now it’s Monday night and Chloe, Mo & I are back home

Lina had a rough weekend but is doing much better tonight. They started treating the aGVHD yesterday with steroids and it seems to have begun to work.

When we left Lina at noon today she was still not feeling well but the team of 5(!) docs who came to check on her at 11am insisted that her rash and condition seemed to be improved.

She ate a baked potato, a smoothie and two bites of an oatmeal cookie tonight – the first solids in 9 days (update: unsuccessful meal). And she says that she feels better – she was even able to watch 2 movies on Moriah’s portable DVD player and part of the Red Sox game tonight.

It’s Saturday night. Chloe, Moriah & I came to Boston today and will stay in the Brookline Courtyard Marriott until Monday.

We spent several hours tonight at the hospital with Lina. The biopsies confirmed today that she has acute graft-versus-host-disease (aGVHD). And she is still having a rough time with its manifestations: vomiting, cramps, diarrhea, rash. Tomorrow, they will begin treating the aGVHD with intravenal steroids.

She had a bad fall today. The nurses thought she may have broken her hip and received a concussion. But x-rays and brain scans were negative. She just has more new pains – and a new bed alarm to let the nurses know when she is trying to get up.

The good news is that Lina’s transplant doctor tells us that if she can ride out the aGVHD without too much treatment it may actually be helpful to the long-term benefits of the stem cell transplant.

Dear Friends & Family

It’s now 28 days after Lina’s stem cell transplant: After 3 weeks of mostly calm, deep sleep, Lina had a rough past week.

They told us the first 90 days were the most likely for complications. And we now have complications.

She started having major balance problems last week which resulted in some ugly falls; then GI problems developed; severe diarrhea, cramps, vomiting etc.

Tuesday afternoon, May 6, the transplant team at Dana Farber said come to Boston now! to be admitted so they can evaluate.

Lina and I drove to Boston Tuesday thinking she would be quickly admitted, but – no. We spent all night in the chaotic and depressing emergency room. I could spend an hour here telling our horror story as further proof of how screwed up our health care system is – but I won’t – for now. But it was horrific. So… sick & sleepless Lina, only at 11pm Wednesday, 28 hours later – was moved from the Brigham and Women’s Hospital emergency room to a private room.

The Docs told us early yesterday morning that they at first feared she had come down with acute graft-versus-host-disease. But, because she didn’t have a new rash – it was unlikely. Then, a couple hours later Lina developed a new widespread rash.

Acute graft-versus-host-disease (aGVHD) is the most common, and most serious, complication from mini-allo transplants.
(see: http://en.wikipedia.org/wiki/Graft-versus-host_disease)

Today they are doing intestinal and liver tissue biopsies to confirm aGVHD, determine it’s ‘stage’ and figure out a treatment plan. They told us that if it’s mild aGVHD she could come home as early as this weekend – if not, we don’t know.

For now, I’m back home with Chloe & Moriah. Lina lost her cell phone while having a blood transfusion last week and didn’t bring her laptop to Boston.

She is in:

Tower 10B – Room 36
Brigham & Women’s Hospital
75 Francis Street
Boston, MA 02115

Direct Room Phone #: 617-732-4682

I’ll update as we know more,

love,
Craig

from today’s local paper…

By Wendy Keeler

Cape Elizabeth High School senior Chloe Brown has won enough Scholastic Arts awards that she could almost create a sculpture with them – most likely an award-winning sculpture.

The 18-year-old just won a regional Scholastic Arts Gold Key award for a work that features deconstructed and reconstructed ink drawings.”It is two pieces together,” Brown says. “One is an ink drawing, and the other is a dress I constructed out of ink drawings. I cut up the drawings and reconstructed them as a dress.”

Brown felt enormous excitement about winning this year’s award, despite having done so before. Last year she won a Silver Key award in the national competition and two regional Gold Key awards: one for a photographic self portrait and another for a conceptual ceramic sculpture.

“It is a huge honor. Getting an award the second year in a row is great,” Brown said.

It was also a big surprise.

Around the country, schools enter students’ outstanding work into regional competitions, in which work is exhibited and judged. Pieces that win at the regional level move onto the national competition.

In the fall, Brown’s CEHS art teacher, Richard Rothlisberger learned that because Maine College of Art (MECA) in Portland was stepping down from serving as regional sponsor, students would have to enter their work straight into the national competition, which Rothlisberger helped Brown do.

While in Costa Rica during February break, however, Brown learned pieces had in fact been judged regionally, and that her piece will move on to New York for the national competition along with other regional winners in the U.S.

Awards or not, Brown, the daughter of Cape artist Lina Newhouser and Craig Brown, will create art. That’s what she has done since she was a little girl, “and my mom got me into it,” and that’s what she will continue to do. Brown plans to go to art school next year.