Storm

Snowfall has been exceptionally heavy in Bellingham, so Mom has come down from Chuckanut Mountain into our home for two days and two nights. We love having her here.

More than ever, she needs hands-on professional care. Andrew, who has been at her side throughout, is escalating service accordingly. Mom could not have chosen a more dutiful, loving husband. He deserves our support too!

Kay Gives Thanks

Hi, Amy here!

It has been an amazing Thanksgiving. Kay, our blessing, is home (see photo of Andrew, Ann, Wren, Kay, and Cocoa) and gives thanks for her family, friends, and the abilities that she has today.

Kay's homecoming has been filled with family (from near and far), delicious food, much-needed rest, and time with her canine companion, Cocoa. Support from friends and family continues...and we are all grateful! We thank the Gale's for a meal delivery program and the Snowballs for helping us locate professional care providers. Kay likes having professional help, and it lets Andrew take care of other matters--including his own health.

For some reason, Kay's ordeal has given her a greatly enhanced sense of humor. She has us in stiches. Next stop...Las Vegas!

Her grace stops me in my tracks. Despite the fear she feels about the progression of PML, she still asks about how everyone else is doing. She worries that her illness may burden others.

Kay has given so much--on so many levels--to us, and it is a pleasure to give back to her now!

Hospital Releases Kay

Mom will be released from UW Medical Center this afternoon and will return home.

Hoping for Return Home Soon

Mom hopes to return home from the hospital tomorrow, November 21st. She will need help with the most basic tasks, and we are making arrangements. We have little idea what lies ahead...a turkey dinner, at least.

Mom is all too aware of the progressive nature of PML and the loss of key strengths and faculties. We are thankful that she retains the uniquely human abilities to reflect, converse, opine, and emote. We are thankful that the love and support of family and friends surrounds her at all times now.

Please read the updated summary information in the right column. My apologies for the absence of separate paragraphs -- that feature is not easily available.

A recent painting of Mom's is posted above. Mom says that it has come to represent the lesion in her right hemisphere.

Kay Strikes Back

Yesterday the sun appeared in Seattle after a period of record rainfall, and Mom gave the JC Virus its first taste of Cytarabine. It felt to us like a turning point.

Mom receives the drug at 2 PM daily until Monday, November 20th. No side effects so far.

Our valiant Hero is gathering strength for the fight of her life. No one has proven herself better equipped than Mom to prevail under such circumstances. Still, I pray for her.

On a lighter note, Mom wants readers to know that "scootch" is the most commonly used word at UW Medical Center. It's a verb meaning to shift or slide one's keister (to the center of the hospital bed).

Kay Approves Proposed Treatment

Following discussions with a large team of physicians in Seattle and Bellingham, all agreed that Mom should begin treatment with Cytarabine tomorrow.

Doctors Say Kay Has PML

Doctors at UW Medical Center have diagnosed Mom with Progressive Multifocal Leukoencephalopathy (PML) and say that the prognosis for non-AIDS patients such as Mom can be better than for AIDS patients. They have asked Mom to consider an experimental treatment using an FDA-approved chemo-therapy drug called Cytarabine. The drug is approved for use with cancer patients but has not yet been approved for use with PML patients. The drug is administered by IV (5-day course) with perhaps 4 weeks between courses. The illness may progress until/unless the treatment takes effect.

We will soon speak to an oncologist who will explain the risks of Cytarabine. We want Mom to make a fully informed decision about whether or not to proceed with this treatment.

Meeting with Doctors 1:30 PM Wednesday

Mom's neurologists scheduled a meeting with her and close family for tomorrow, Wednesday, at 1:30PM to discuss progress, if any, on a diagnosis. In the meantime, we have been trying to master the pronunciation of--take a deep breath--Progressive Multifocal Leukoencephalopathy. Our hope is that, if successful, her doctors will assign us something harder to pronounce but easier to treat.

Mom thanks all who have posted comments on this blog and those who visited today including B. Rona, B. Ryan, J. Fleetwood, J. Bergsma and S. Hass. The phone in her room rings non-stop, giving Mom hours of pleasure chatting with well-wishers.

Successful Lumbar Puncture

Mom's Lumbar Puncture (LP or spinal tap) is behind her -- pun intended. The delay may push test results to Wednesday.

We have seen no major changes in her condition during the last three days. With two nights of good rest under her belt, Mom was more chipper today. The 4PM LP was a harsh speed bump, however. Is four attempted LPs in five days a record?

Love starts to pour in...

Kay is greatly cheered by today's visits from family and friends including the Goodings, Selfs, and Grays. When sitting with Kay, please be aware that she has lost some peripheral vision on her left side. Position yourself accordingly. And, watch-out when trying to pass Kay on the left;-)

Kay and Andrew had tears of appreciation while reading e-mail messages on Andrew's new mobile phone (see photo above):

Kay gets an MRI tonight. It's meant to update the MRI from late October. On Monday, she gets another spinal tap and will be on robust pain meds -- not a good day to visit.

A re-hydrating IV drip was removed today, leaving Kay without her dance partner, "Fred Astaire." The extra fluids gave her better color and a bit more energy.

Please look at the photo of Kay with her grandchildren, Wren and Ann. It's a good thing that the kids were there to help with the bewildering array of remote control devices that the neurology care unit expects its patients to master!

Hoping for results by late Tuesday

Another lumbar puncture will be attempted Monday using a different technique. Results may come in late Tuesday. More waiting...

The attending neurologist cautions against a rush to judgment on any diagnosis. He will not treat in advance of a diagnosis. He points out that most PML patients are immuno-supressed...and he thinks that Mom is probably not immuno-supressed at this time.

Sent via mobile handheld.

Delay...

Mom did not receive a lumbar puncture as expected last night, and I presume this means a delay in diagnosing her condition. Andrew, Amy, our children, and I will be in Seattle today and overnight.

Contacting or Visiting Kay

Mom is resting comfortably in a private room at UW Medical Center area 4 Northeast. We await her physicians. Not sure how long she will need to be here. Her sense of humor is fully intact. More laughs than tears today.

Prime suspect identified...

Writing this on my mobile phone.......A top neurologist at Evergreen believes that Mom has a rare brain infection called Progressive Multifocal Leukoencephalopathy (PML). It attacks the white matter of the brain and is treated with antiviral meds. We are trying expedite a lumbar puncture to test spinal fluid and confirm the diagnosis. She will be checking into the UW Medical Center today at 4 pm.

Wonder Woman...

As some of her family and friends are now aware, Mom (Kay) is finding certain ordinary tasks increasingly difficult to perform. Consistent with her medical history, this latest malady is...another mystery. An MRI shows something in the right hemisphere of the brain, and her local doctors have ordered a variety of tests to determine what it is. It's probably not a stroke. So, does Mom have cancer, chemo-damage, an infection, or what?

Tomorrow, we heighten the tempo of the diagnostic efforts with a visit to a world-class neurologist in the Seattle area:-)