I apologize for the long silence. It has felt like there is not really any news--just more of the same. We have decreased Manford's dose of steroids, going successfully from 6 to 4 milligrams per day, which I think has been helping. The oncologist thought that many of Manford's symptoms (including poor sleep, dry skin, high blood sugar, and maybe some of the fatigue) were due to the steroid, and I do think he is a bit better over the last week or so. Both the oncologist and the neurosurgeon think he's doing well, looking at the MRI primarily, but also because he can still walk (he is practicing taking laps up and down our hallway), and they think that the fatigue and some of the memory problems may be still due to radiation effects, and may gradually improve. The more I talk with other caregivers, the more I realize that the radiation can really take a toll, and that is hopeful in that he might feel better.
Manford has been drawing, and we have been watching funny movies, and he now has a weekly visit with a volunteer who takes him out somewhere (to a cafe, or bookstore), and he seems to enjoy that a lot.
Joseph has just finished a week and a half of practice exams--I grumble as it seems like they spend an incredible amount of time on exams when they could actually be learning something...but he seems more challenged and involved in school. He is looking forward to his trip to the US, starting in 3 weeks. Hard for me to believe I'm sending him off, passport in hand, to travel up the west coast with Aunt Sarah, then fly from Seattle to Chicago to visit with the Freeds, then to Kansas for a week, then back to Sacramento and home via San Francisco (possibly with excursions to Santa Cruz and Stanford).
Emily has been enjoying being sole goalie for her soccer team. Too bad they didn't have a game yesterday, which was a beautiful sunny fall day, but it's Queen's Birthday weekend, and no sports because I guess we're supposed to be doing something--not sure what--it's not quite skiing weather, but not beach weather, either. Today it is rainy and gray, more typical soccer weather...
One nice thing we did last month was go to a weekend retreat sponsored by the brain tumor support group, at a camp in Raglan, just less than an hour from here. The camp was basic, but the view was amazing, and it was good to spend some time with three other families--two with children--who have a patient with a brain tumor. I'll post a picture or two. And I got a nice massage, and they had volunteers who cooked and cleaned up and we were pampered, generally.
Manford starts his third round of Temodol, which is an oral chemotherapy agent, this week. Fortunately, it doesn't seem to bother him much--a little nausea, but nothing major. The next MRI is not for two more months, when we see the neurosurgeon (actually, a neurosurgery resident, called registrar, here, who Manford calls the baby doctor, but who is probably 30, and very nice. Jason. I don't even know his last name. doctors are different here, that way--they are almost all on a first name basis).
And Charlie is getting awfully shaggy, having missed her beauty appointment and it not being on the top of my list right now...she continues to entertain herself gazing out the window and barking at selected passersby.
I will try to find those pictures, now...
Carrie
Sunday, June 6, 2010
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2 comments:
Hi guys: Great to hear about your "keeping on." You are so lucky to live in a country where beauty is at your fingertips. And I love the fact that the doctors are on a first name basis. Thanks for the news.
Say hello and send my love to all!
Hey Carrie, Miguel and I leave for Spain and Tanner leaves for Illinois. We will be back around 7/20 ish. We would love to see young Mr Barber!!!!
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