Time and Again
A year ago, John was in the hospital at Emory and in what was (and I hope will always be) the worst days of his disease. I've been trying to get a sense of how level his plateau is going to be as he settles into what will have to do for "normality". I hope and expect a slow strengthening for him and occasional bumps, but hopefully not much more. Still, I've come to hate, or at least fear, the sound of the telephone because any call could bring bad news. The ocean is pretty flat when you look at it from the shore, but when you are at sea, ups and down are all you feel. I suspect that is what we will learn to live with.
John participates in a trial with Seattle on anti-fungal medication which requires him to FedEx blood samples weekly to the clinic there. Although they follow closely his results and care at Emory, the trial means that they are also regularly testing his blood themselves.
Yesterday, he received a call from Seattle asking that he go in today for additional blood samples and send them out. Me mentioned that they thought his neutrophils (the working antibodies in the white blood cells) looked low. Probably nothing other than an example of what it is like with this kind of life. I don't get sea sick, but the emotional ups and downs from such little things still cause me to react with similar symptoms. John remains cautious, appropriately so, but he doesn't seem to worry or dwell, which is good.
Debbie found a house in Decatur that would fit our needs well. Naturally, it costs too much, but John, for the time being and always potentially again, would have a whole floor to himself in the daylight basement, with room to park and an entrance of his own. It's just a thought for now, but one to consider. We are working on our house, and having it worked on, in the meantime - insulation, stripping and painting, gutter covers and lots more.
Courtney returns Sunday from a few days in California, and we have lots to do for her before she leaves for school in Peru. It will be a different and better Holiday season this year - perhaps as busy, but more our new norm for life.
John participates in a trial with Seattle on anti-fungal medication which requires him to FedEx blood samples weekly to the clinic there. Although they follow closely his results and care at Emory, the trial means that they are also regularly testing his blood themselves.
Yesterday, he received a call from Seattle asking that he go in today for additional blood samples and send them out. Me mentioned that they thought his neutrophils (the working antibodies in the white blood cells) looked low. Probably nothing other than an example of what it is like with this kind of life. I don't get sea sick, but the emotional ups and downs from such little things still cause me to react with similar symptoms. John remains cautious, appropriately so, but he doesn't seem to worry or dwell, which is good.
Debbie found a house in Decatur that would fit our needs well. Naturally, it costs too much, but John, for the time being and always potentially again, would have a whole floor to himself in the daylight basement, with room to park and an entrance of his own. It's just a thought for now, but one to consider. We are working on our house, and having it worked on, in the meantime - insulation, stripping and painting, gutter covers and lots more.
Courtney returns Sunday from a few days in California, and we have lots to do for her before she leaves for school in Peru. It will be a different and better Holiday season this year - perhaps as busy, but more our new norm for life.
