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Kay in August
News about Kay and her fight against the JC Virus that causes PML -- posted by her family.
Kay in August
SUMMARY
Kay returned home from UW Medical Center and died on Thursday, December 28, 2006. She was diagnosed with Progressive Multifocal Leukoencephalopathy (PML), a rare and deadly demylinating disease of the central nervous system. PML is caused by reactivation of a virus (JC Virus) that is latent in 86% of adults. Reactivation occurs in immunosuppressed individuals, including some chemo-therapy patients. Kay's visitors are not at risk.
The virus destroys cells that produce myelin, a fatty substance that insulates a neuron's axons and protects the transmissions therein. Areas of demylination appear as brain lesions. And, the lesions' locations in the brain determine the symptoms.
Symptoms may include altered mental status, motor deficits, unsteadiness, and visual impairments. Kay was acutely aware of her symptoms which include cognitive deficits mainly related to spacial perception (hard to drive car, open gift, or remove cap from toothpaste) and the loss of some sensitivity, strength and vision on her left side. She is not in pain.
There is no cure for the PML. Kay was treated with a toxin called Cytarabine. It has stopped the progression of PML in a minority of cases like hers and has allowed a least one patient to improve, regaining lost functions. So few people with PML have been treated with Cytarabine that outcome data was not useful in predicting how Kay might respond.
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Blog Archive
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2006
(23)
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November
(15)
- Storm
- Kay Gives Thanks
- Hospital Releases Kay
- Hoping for Return Home Soon
- Kay Strikes Back
- Kay Approves Proposed Treatment
- Doctors Say Kay Has PML
- Meeting with Doctors 1:30 PM Wednesday
- Successful Lumbar Puncture
- Love starts to pour in...
- Hoping for results by late Tuesday
- Delay...
- Contacting or Visiting Kay
- Prime suspect identified...
- Wonder Woman...
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November
(15)
3 comments:
What a great way of sharing information!!! Thanks to Rob and Amy. I am still in a state of some kind of shock at this strange potential diagnosis, PML. I have been praying like crazy and I have submitted prayer requests for Mom too. There are lot of people she doesn't even know sending up some powerful prayers.
Big Love,
Julia
You are non-stop in our thoughts and prayers. We love you so much and rejoice in knowing what a tenacious, upbeat, gal you are. Great photo surrounded by Wren and Ann. Reassuring to know that your dear ones are present and rooting for you and that such competent care is at hand. Jackie and Dick White
Dear Kaybird and Andrew, We are sending you our love and best wishes and wish we were there. But I know you Miss Kaybird, and you can dig so deep for strength, healing, loving and living. So keep doing what you do best! Please know we are all singing our favorite WW song to you.."Has anyone ever told you"...you sing it with us...Love you, Kirsti and Peter
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