Thursday, May 10, 2012

The Note

Family and Friends,

It's been a little bit since the last real update on Kevin past his entering into Home Hospice Care this January.

It's been a rough few months with many new challenges, but also quite a few wonderful moments, new memories for us both, and a wonderful outpouring of "geek" support for my beloved Browncoat.


Kevin is having a lot more issues right now, which is the nature and course of his disease. Before he went into Hospice service this year he had made it well known he was not interested in more chemotherapy when his brain tumor(s) came back; he wanted the best and happiest quality of life he could have for as long as he could have it. I have done my best to honour his wishes and with some wonderful support from around the world, I have been able to keep him at home and mostly comfortable. He does not consider this to be "giving up" or "not fighting"; he is working with his grief towards acceptance of the end course of his disease. Please know that the intent of this message is only to give you the opportunity to get some closure both for Kevin and for yourself. To give you the knowledge and awareness that despite our best efforts, an immense amount of prayers and well wishes, the love and support of our family and friends, and the best advances that medical science has to offer, he is not going to get "better".

We are losing Kevin, day by day, and the course is set and tragically unchangeable. I would have you know that, and have the choice about how you would like to handle saying your goodbyes. We also want to pass along that the window for saying your goodbyes is starting to close more quickly now so if you wish to visit or call or write, you should immediately start making those plans. Since stimulation has a direct line to his exhaustion and fatigue please take directly to me if you are out of State and would like a longer visit (over a period of a few days).


I am asking those who are local to try if you can to come for a day/evening visit or even a phone/Skype call. He is still able to enjoy things, and his personality still shines through on most days; but he is having more days where he does lose "himself". This is common with brain injuries/cancer. He may recall you and every detail from the last time you were together, but also be aware he may not really recognize you or how much time has passed between events. If he is not upset over this, or seems to be in a time period from when he was younger, that again is just part of his disease. For now we suggest day/evening visits be kept to 1 hour or less, unless details have been discussed with me prior. Some days he may like to go out for burgers, or to see a movie - and he has a wheelchair if he needs it on those days, and others he may just enjoy a short game or talk at home.


I will do my best to address any questions you might have.We both thank everyone for the continued kind thoughts, wishes, and prayers.


Tashi Pratt-King

Please visit www.savewash.com for more information on Kevin and Glioblastoma Multiforme brain cancer.

8 comments:

  1. I have so much love for you and for Kevin... your story breaks my heart. After he is finally free to infinitely travel space and time, you need to be sure to work on yourself. You have a long future ahead of you, hopefully, and you deserve to enjoy it. I am so sorry that the two of you have to go through this. So much love..

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  2. I have never met you or Kevin, but I feel like I know you somehow through your words. You are an amazingly strong woman, and your love and support for your husband is truly inspirational. Thank you for sharing the good, bad, and ugly parts of your life with us.

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  3. I sure just wish (as always) that I could be there in Tempe to help you, Tashi, i.e., as you *very bravely* go on now. 'Holding you close in my thoughts and prayers............

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  4. Thinking of you. A horrible time - a beautiful letter. I hope you get as many more good moments w/ Kevin as are possible, and that you are able to share w/ him in ways that are meaningful to you both. But please know this: whatever the tumor is doing to his emotions, his chemistry and his behavior, on the most profound levels he knows how you care, and is aware of all that you are doing for him.

    My best thoughts to you - to Wash in this horrible hard dwindling time for him, and for you, who have to live through it through him, and as yourself. Cancer is an evil, evil bastard.

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  5. Like many others, I have also been reading your story from the beginning. Your story has changed my outlook and meaning of life. I love you both.

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  6. Bravely said. My prayers for both of you.

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  7. I came here through a Facebook post - that was several hours ago. Having now read through your story, from the beginning, I cannot even begin to imagine what you are going through, despite reading about it.

    I keep trying to compose a message, and my eyes keep filling with tears. I am not in a financial or geographical position to be able to do anything, but I wish I could. I am amazed and humbled at the strength you're showing. I will be keeping you both in my thoughts.

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