John is Home

Dear Friends and Family,

We brought John home today.  He is resting comfortably behind me as I write this.  We have a hospital bed downstairs in our family room so that he can be as much a part of things as he is able to. We had a little bit of a rough start this morning transporting him, and maneuvering the wheel chair and the other equipment we're learning to use.  There were lots of people here trying to help, and he seemed to get very frustrated at the confusion and at not being able to express his needs.  But later, he and I enjoyed some quiet time alone together out on our back patio.  He sat in the wheelchair and I sat across from him, holding his hands.  It was an unseasonably warm fall afternoon.  The late afternoon, golden light played on the hill behind our house and made the leaves, already beautiful in shades of red and yellow, seem to glow.  Woody was at his feet, the birds were singing, a warm, gentle breeze was blowing, and there was no need to say much at all. 

My dear sister, Stacy, was here helping all day, and running out to get all the things we needed that I hadn't thought of.  We have a professional caregiver here helping too.  She will stay with me at least until our son, John, gets back here.  Dr. M recommended we have two people here at all times.  My sisters will be providing respite for us, and Hospice met with us today to get their wonderful support started as well. 

John has been taken off of curative care.  No more chemo.  The doctors say it would only make him sicker now.  He will be receiving care from the trained staff at Hospice to make him as comfortable as possible here at home.  He is still having great difficulty talking and with motor function. He cannot stand or even move his legs without assistance. He is eating and drinking very little, and sleeping quite a lot.



I had some good friends stop by today to help out too.  Thank you, Bruce, for helping get John into the wheelchair while I was napping, and for taking Woody out for a spin.   Manitooboo Lisa, who is in town caring for her aging mother brought me a delicious dinner, and she and Gloria perked John up quite a bit.  He was joking with them, and he seemed to enjoy his own jokes, even if we didn't always quite get them.

John's brother, Frank, and his wife are here, as are his donor sister, Lisa, and her husband.  They enjoyed some down time today and explored a bit of our beautiful central coast with a visit to Hearst Castle.  The Fiore family has had too much sorrow this fall, with the loss of their mother just last month, so I'm glad they were able to get away for a bit.

I thought I was mentally prepared for this, but it is clear I'm not.  After five years of Superman, I think this caught us both by surprise.  Thank you all for your warm wishes and kind words.  I will pass them on to John. 

With love,
Dana