Thursday 3/24/11

(link to photo album)

7:30 AM Meg is doing even better than when we left her last night, after her Smith lab supplied, Nick catered, dinner. Her speech is still improving, and she's finding talking to be less of an effort. She's looking forward to a shower.









Craniotomy Barbie has come along to keep Meg company.

9:30 AM: Dr. Jost visited Meg and continues to be impressed with her recovery. Coming up today:

• stair climbing practice (done)
• dressing removal, to allow everyone to admire the staples holding the incision closed
• shower and hair wash!
• speech therapy
• chance to walk around, leave floor, visit Starbucks (the hospital epicenter).

Dr. Jost visits again Friday morning and will probably let Meg go home in the afternoon.

Text message from Elspeth at 3 PM: wound gauze removed, meg is showered and happy.



Plans:

• Elspeth leaves Friday morning
• Meg (tentatively) comes home Friday afternoon
• Nick leaves Sunday

Wednesday 3/23/11: updated again with pictures

Breakfast

Meg is out of bed and is moving to the regular neuro ward today. She's speaking easily without hesitation but slurring words a bit. A great improvement since yesterday.
Her head hurts a lot (wonder why?) and she didn't sleep much (ditto), so she's dozing a lot. When awake she's her normal sharp self. She answered (and predicted) all the Dr's questions during the morning rounds.

7:50 Meg is eating heartily, albeit not quite as elegantly as normal.

Summary: all looks good!!!!!

~ Noon: Meg's surgeon, Dr Sarah Jost, and her physician's assistant stopped by. Dr. Jost was even more optimistic than she was yesterday. The post-operative MRI had shown that all the accessible tumor had been removed, and that there was no residual tumor left needing radiation treatment. There were minor areas of concern, (and there are typically invisible areas of infiltrating tumor) but nothing that could be safely excised, given that the surgery had had some effects on Meg's speech.

Meg will have both inpatient and outpatient speech therapy: it's clear that most of her speech generation is on the unaffected side, so recovery should be easy.

Meg has now moved from Intensive Care to the regular neuro ward (room 526E, call/text Andrew @ 206-660-3592 if you'd like to visit), after only 1 night. She was in intensive care for 3 nights last time. She might be home by Friday.

Plans:

• Staples (that hold incision closed) out in 2 weeks.
• Back on Avastin in ~ 4 weeks: experts we've consulted are divided about whether it will be effective. Ditto the Temodar chemotherapy.
• Longer term: perhaps return to National Institute of Health for another examination and discussion of possible clinical trials. Then probably on to stay with Nick in NYC

BTW Meg is now accepting e-mails: Margaret.a.holmes@gmail.com

Regular room; laptop

Treats courtesy of Smith lab gift box (as was dinner)

Surgery at Swedish

5:30 AM check-in!

5:43 well, we're ready.

7:10 off to surgery. Should be done about 11.

1:30 PM: Meg is in recovery. We just talked with Dr. Jost : everything went extremely well. She's very happy with the surgery. She'll be even happier after the next 24 hours. We'll see Meg in about an hour.

3:30 PM: Meg is in the ICU. She's totally cogent, awake and alert. She's having some issues articulating some words but that is expected to improve.

5 PM: Dr. Jost visited Meg in her ICU room.

7:30 Meg's having dinner. Kids have had dinner and a nap and are coming in for the evening shift. Andrew will leave for the evening and return for Dr. Jost's 6:30 AM morning rounds.

- Posted using BlogPress from my iPhone, hence the typos and tiny posts.

All ready for Meg's surgery on Tuesday

Meg had her Wada test on Friday, which showed that some of her speech comprehension is indeed on her right (tumor) side, so she will be woken up during surgery to map areas of her brain that are safe to excise.

Nick arrived home on Friday evening, and Elspeth on Sunday evening.

Today (Monday) Meg met again with the neuropsychologist to review the tests she will do during the awake surgery. This evening she had another functional MRI and then an MRI for use with the StealthStation that the surgeon will use to help excise her tumor.

Plan for Tuesday:

• Meg will get up at 4:50 AM to shower with special antibacterial soap
• She will check in to Swedish Hospital at 5:30 AM and do the necessary whatever for her:
• 8 AM surgery
• Length of surgery unknown: we guess 3 - 6 hours
• We expect she'll be in the neuro intensive care unit for a day or two, and then on the regular neurology ward for 3 to 4 days before she comes home.

I'll post brief updates via my iPhone.

Thank you all for all your kind messages of support and for your prayers, all of which we find very comforting.

Treatment Plans

It's been a busy couple of weeks since we first got the MRI showing that the tumor in Meg's head had returned.  We consulted a neuro-oncologist at the University of Washington, Meg's radiation oncologist, Meg's surgeon (Dr. Jost) and finally with the people at the National Institute of Health (NIH) Neuro-Oncology Branch, whom we had visited while back East last Spring.

We were torn between the relative merits of surgery to remove as much tumor as possible, versus Cyberknife treatment to kill it with radiation. The experts seemed pretty evenly divided, but we were swayed by the NIH people, with their wealth of experience. We also realized that surgery gave the greatest flexibility to cope with the parts of Meg's brain which receive speech, some of which are on the right (tumor) side, presumably because she's left-handed.

Meg and her surgeon, Dr. Sarah Jost

Here's the schedule:

• Thursday, met with Dr. Haltiner (Neuropsychologist) who will prepare Meg for, and administer:
• Her Wada test on Friday, which checks for speech activity in the right hemisphere by temporarily turning it off!
• On Monday evening she gets some MRI's
• Our son Nick will arrive on Friday night, and our daughter Elspeth on Sunday or Monday
• Surgery will be next week, probably on Tuesday, and Meg is expected to be in the hospital for 3 to 5 days, and expects to be off work for ~ 6 weeks.
• She may need Cyberknife radiation for bits the surgeon can't remove.
• We'll probably go back to the NIH in about a month to consult them about further treatment possibilities.

Meg did so well with surgery 15 months ago that we have every confidence that she will do great this time.

(and here are some happier times)

The Northwest Clarinet Choir performing  Aker Bilk's "Stranger on the shore"  last Sunday, Brad Stevens, soloist. Meg, in her black hat, can be seen in the foreground,

And she'd just grown enough hair to warrant a haircut!

February ski trip on Iron Horse Trail

 

Not so good news - updated

• Meg's MRI last Friday showed significant regrowth of her tumor at its original site; it's about 3 cm x 1.5 cm. The good news is that it hasn't spread to other sites.
• We met with the neuro-oncologist, Dr. Henson, on Friday and again today, Monday. He consulted with the tumor board and also with Meg's surgeon (Dr. Jost), who is out of town.
• We will again be consulting Dr. Marc Chamberlain, at the University of Washington, for a second opnion and for advice about possible future treatments.
• We will meet with Dr. Jost on Friday morning, after she's had a chance to carefully study Meg's MRI.  Our expectation is that she will decide to operate next week, to remove as much of the tumor as possible. We'll know more after our visit on Friday. Meg's functional MRI, performed last Summer, indicated that this surgery would be appropriate.
• There's a possibility that tumor that can't be removed surgically can be treated with Cyberknife or Gammaknife radiation.
• Nick and Elspeth will be flying home for the surgery, and will be with us for a few days.
• We just learnt (3/8/11)  that Meg had been on Avastin during the clinical trial, and will be on it again as soon as her surgical wounds have healed.

End of clinical trial, and other notable events

Family Christmas dinner:  chefs Meg and Nick

1/1/11 cross-country ski trip

Meg and Caryn at Seattle Conservatory

"Pandemic" board game with Adrian & Caryn

Last (clinical trial) infusion: 2/2/11

 Very little to report:

• Meg continues in pretty good health: assorted aches and pains, but she's busy at work and at home and with her clarinet choir and orchestra.
• Nick and Elspeth were both here for Christmas. We had a lovely time together.
• We got out on skis, first time for several years. Hope to again this weekend.
• Caryn, Meg's sister, and her older son visited over the ML King weekend: we chatted (lots), we strolled, we dined, we played board games.
• In mid-January Meg had the last cycle of chemotherapy pills, and on February 2nd she had the last infusion of her clinical trial. The doctors now monitor her condition via MRIs (next one on Feb. 28th) and we hope that she won't need any more treatment. Andrew is keeping up on current clinical trials, in case more treatment is needed. Meg feels nervous now that treatment is over, but is looking forward to greater energy levels as chemotherapy is over. 
• Turns out that we don't find out if Meg was taking the experimental drug (Avastin) or the placebo until the trial is over in a couple of years, unless her tumor returns: they will then tell us, to help guide future treatment.
• It's a month of celebrations: Andrew's birthday (Feb. 8; 62), wedding anniversary (Feb. 14, 30 years!), Nick's birthday (Feb. 17; 29), Meg's mother (Feb 25; you'll have to ask her).