Thursday, August 26, 2010
Home again, home again
Manford was discharged this morning, and is happily napping in his own bed. Now the poor guy has to look forward to a bumbling needle-phobic trying to jab him in the stomach with his blood thinner every day...the hospice nurse will come and help teach me to do this. At least we have one registrar (resident) opinion that it is still ok for him to use the hot tub, which is due to be installed this week.
Wednesday, August 25, 2010
Ward 25
Manford was hospitalized yesterday on the oncology ward at Waikato Hospital for a big (knee to groin) blood clot in his leg. Apparently brain tumor patients are at particularly high risk for this. He isn't in any pain--just a very puffy foot--and is on blood thinners. I hope to find out more from the doctor today. The risk is that it could travel to the lung/heart of other parts.
At least it seems like a relatively nice unit, for the public hospital--private room with a view and a poster of puppies on the wall. And even a TV!
I'll write more when I know more.
Carrie
At least it seems like a relatively nice unit, for the public hospital--private room with a view and a poster of puppies on the wall. And even a TV!
I'll write more when I know more.
Carrie
Sunday, August 22, 2010
We are all ok
I'm sorry it's been so long--just the usual busy one thing after another. Manford just finished his fifth course of chemotherapy, and is in the process of tapering off of steroids, we hope. The combination of steroids and chemo has made his skin so thin that he has all kinds of bruises and blood blisters under his skin, and cuts himself at the drop of a hat. Friday I was trying to change a bandage and tore the skin just taking it off, so now we have elaborate procedures, and luckily the nice hospice nurse came today and changed it, as I was scared...but he is feeling better, walking better, with more energy and better short term memory. All that probably mostly the effects of radiation wearing off, and maybe also decreasing steroids. We are planning some travel over the next few months, when he is likely to feel his best. In October, we hope to go to Sydney and the Great Barrier Reef, and then in the summer (maybe December or January), we will go to the South Island; he'd like to see some whales, and there is a famous whale-watching area in the northeast part of the island, and then maybe see Milford and Doubtful Sound in the southwest.
The kids are fine; I will post a picture of Joseph all spiffed up for his school ball (prom) last night; it sounds like it was a good event, no pressure to bring a date, or even to dance...the theme was "Cluedo," which is the game we call "Clue" (Professor Mustard in the kitchen with a lead pipe...). Joseph did his first bit of useful driving since he got his restricted license; he went and picked up Charlie at the doggie day care, where she has been going to avoid the man digging up the back yard, which would deeply offend her sense of territory. Joseph is not allowed to drive anyone else who hasn't had a license more than two years, but we have interpreted that to mean humans...
The backyard is being dug up to put in a patio for a hot tub, which we are looking forward to. Emily and I went around "wet testing" various models and settled on one, only to discover that the deck in the back was not strong enough to hold a hot tub, and the one that had been there previously was set into the deck, anyway...so no more deck, extensive digging and leveling, and lots of gravel and complicated procedures, and maybe next week we will have a patio.
Emily is very excited at the imminent prospect of getting a baby bunny. We succumbed to a hutch on sale, so now we need to follow through and find a bunny, which looks like it will involve a trip to Auckland in two weeks, when some baby dwarf rabbits will be old enough to take home.
I finally got out in the garden a bit yesterday, and pulled up a bin's worth of weeds. It is early spring, and alternating rain with bright, cool sun, sometimes in five-minute intervals--but good for weeding. Daffodils are blooming, and it is time to start planting things. I still have to think carefully about what month it is; I'm not sure how many years it takes to get used to being upside down.
Yesterday in the hallway outside my office, which leads to a door marked all over with "emergency exit only" signs(which cowed me at first, but is used routinely by everyone all the time), a man was heading out and then stopped, saying "I guess I can't go this way." I assured him that he could, and everyone did, and he noticed my American accent, and asked where I was from. It turned out he was from Sacramento, and had gone to Rio Americano High School a few years before I did...so even on the other side of the world it is a small world. Come visit us!
Carrie
The kids are fine; I will post a picture of Joseph all spiffed up for his school ball (prom) last night; it sounds like it was a good event, no pressure to bring a date, or even to dance...the theme was "Cluedo," which is the game we call "Clue" (Professor Mustard in the kitchen with a lead pipe...). Joseph did his first bit of useful driving since he got his restricted license; he went and picked up Charlie at the doggie day care, where she has been going to avoid the man digging up the back yard, which would deeply offend her sense of territory. Joseph is not allowed to drive anyone else who hasn't had a license more than two years, but we have interpreted that to mean humans...
The backyard is being dug up to put in a patio for a hot tub, which we are looking forward to. Emily and I went around "wet testing" various models and settled on one, only to discover that the deck in the back was not strong enough to hold a hot tub, and the one that had been there previously was set into the deck, anyway...so no more deck, extensive digging and leveling, and lots of gravel and complicated procedures, and maybe next week we will have a patio.
Emily is very excited at the imminent prospect of getting a baby bunny. We succumbed to a hutch on sale, so now we need to follow through and find a bunny, which looks like it will involve a trip to Auckland in two weeks, when some baby dwarf rabbits will be old enough to take home.
I finally got out in the garden a bit yesterday, and pulled up a bin's worth of weeds. It is early spring, and alternating rain with bright, cool sun, sometimes in five-minute intervals--but good for weeding. Daffodils are blooming, and it is time to start planting things. I still have to think carefully about what month it is; I'm not sure how many years it takes to get used to being upside down.
Yesterday in the hallway outside my office, which leads to a door marked all over with "emergency exit only" signs(which cowed me at first, but is used routinely by everyone all the time), a man was heading out and then stopped, saying "I guess I can't go this way." I assured him that he could, and everyone did, and he noticed my American accent, and asked where I was from. It turned out he was from Sacramento, and had gone to Rio Americano High School a few years before I did...so even on the other side of the world it is a small world. Come visit us!
Carrie
Tuesday, July 13, 2010
Happy Birthday Charlie!
Charlie was four this Sunday. We did not have cake, but she got a new bed, a rawhide bone that made her very worried until she could take it outside and bury it, and some doggie snacks she enjoyed and devoured in seconds. It was very hard to get her to sit still for the picture.
Thursday, July 8, 2010
MRI OK
We met with the oncologist and got the results of Manford's MRI--no change from the previous one, which is good news--maybe not quite as good as the prior one, which showed shrinkage, but the doctor still thinks it means that he has the genetic whatchimicallit that makes the tumor vulnerable to this particular chemotherapy (which only about 1/3 of people have). So we continue with the chemo, starting this month's round a couple of days late because Manford has some kind of infection in his ankle--swollen and painful for the last couple of days--but otherwise he is feeling ok. We are missing Joseph, but looking forward to hearing all about his trip, if not from him, maybe from my network of informants...Manford's birthday is coming up on the 22nd, so we are trying to think of a suitable celebration. Joseph will be home so I guess we can have American junk food--Fritos and marshmallows?
Sunday, July 4, 2010
The fourth of July
Just another day here, and it isn't REALLY independence day yet because it isn't the Fourth there, yet...well, maybe on the East Coast, barely. So Happy Fourth of July, Marian, Suzy, and to the rest of you as it comes...
Another month has rolled by and I haven't written. A very busy month, at my work, as we had an accreditation site visit for the clinical programme, the first such process in New Zealand, so no one quite knew how nervous to get, but I, being American and having a tradition of horrors such as JCAHO accreditation, and APA accreditation, and such, had it in my genes to take it seriously, unlike my colleagues, who managed to get the first attempt postponed by both being out of town for the appointed days...anyway, it was a relatively painless process, a very collegial and clinical evaluation in which they asked very good questions but were also clearly identified with our side of the process, helped along by the fact that the chair of the site visiting team was the director of the next programme up to be visited...and then two days later I chaired the oral exams for our interns, a two day ordeal in which I sit with two external examiners in a room with extremely nervous students trying to show that they know what they are doing. They all passed (a couple by the skin of their teeth), so I had happy phone calls to make afterward. During all this Manford had peace and quiet at Hospice, and then had to get used to being at home again with the dog barking and Emily singing incessantly (which in my book is better than a lot of other things she could be doing, but took some adjustment after the calm at Hospice).
Then, last week, we put Joseph on a plane for California (and Chicago, and Kansas). We decided to all make the trek to Auckland, where Manford and Emily stayed in the motel room while I took Joseph to the airport and launched him into the unknown at the security line, hovered around for an hour making sure he wasn't extruded in some way, and then wandered, only slightly forlorn, back to the motel. We visited Butterfly Creek, an attraction we have driven past many times on the way to the airport; it's a rainforest-like dome with lots of butterflies and birds, and has added on various non-sequitors like crocodiles (which are BIG) and baby farm animals (for some reason mainly including guinea pigs and rabbits, but also a very engaging 18-day-old pig called Wilbur) and Emily entered in spite of the ubiquitous taxidermy (stoats, possums and weasels, the villains of New Zealand) and a good time was had by all.
Emily is on school holidays (a three-week break between terms two and three, of four), and has been hankering for snow, so we decided to make our first real expedition to the mountains since coming here. Last year when Sue Wine and her mother were here we got somewhat close, but it was sleeting and we didn't go far enough up to see snow. So this time we got a reservation at a grand old hotel (the Chateau Tongariro) and borrowed a child so Emily could have someone to pelt with snowballs, and we drove the three hours to Mt. Ruapehu (not mentioning to Emily that this is, actually, an active volcano that did erupt two years ago, but no one seems very worried about that, really). I will post some pictures. Manford stayed in the lovely hotel, while I drove the girls up the mountain for sledding and snow angels and snowman-building. Rachel, Emily's friend, had never seen the snow, and was thrilled. For some reason she was inspired to eat quite a lot of it. It is a different landscape than the Sierras or the Rockies--very rocky, a bit bleak if it weren't for the snow. Actually, the next mountain over (which you will see in the pictures, looking very classically volcanic) was Mt. Doom, for LOR fans. In two years, Emily will tramp the Tongariro Crossing, a famous all-day alpine trek that is described as "challenging" in the guide books...it is part of the Year 8 camp rite of passage at Southwell School. Parents are warned not to come unless they are "fit"...
Anyway, we made it down the mountain again and are home, have made phone contact with Joseph in Topeka, and getting ready for Manford's MRI tomorrow, starting another week of chemotherapy. He has been reducing his steroid dose gradually but successfully, so if the scan looks good he may be able to get off the steroids for the time being, which would be very good.
I will post some pictures, and try, again, to do better at keeping you posted...
Carrie
Another month has rolled by and I haven't written. A very busy month, at my work, as we had an accreditation site visit for the clinical programme, the first such process in New Zealand, so no one quite knew how nervous to get, but I, being American and having a tradition of horrors such as JCAHO accreditation, and APA accreditation, and such, had it in my genes to take it seriously, unlike my colleagues, who managed to get the first attempt postponed by both being out of town for the appointed days...anyway, it was a relatively painless process, a very collegial and clinical evaluation in which they asked very good questions but were also clearly identified with our side of the process, helped along by the fact that the chair of the site visiting team was the director of the next programme up to be visited...and then two days later I chaired the oral exams for our interns, a two day ordeal in which I sit with two external examiners in a room with extremely nervous students trying to show that they know what they are doing. They all passed (a couple by the skin of their teeth), so I had happy phone calls to make afterward. During all this Manford had peace and quiet at Hospice, and then had to get used to being at home again with the dog barking and Emily singing incessantly (which in my book is better than a lot of other things she could be doing, but took some adjustment after the calm at Hospice).
Then, last week, we put Joseph on a plane for California (and Chicago, and Kansas). We decided to all make the trek to Auckland, where Manford and Emily stayed in the motel room while I took Joseph to the airport and launched him into the unknown at the security line, hovered around for an hour making sure he wasn't extruded in some way, and then wandered, only slightly forlorn, back to the motel. We visited Butterfly Creek, an attraction we have driven past many times on the way to the airport; it's a rainforest-like dome with lots of butterflies and birds, and has added on various non-sequitors like crocodiles (which are BIG) and baby farm animals (for some reason mainly including guinea pigs and rabbits, but also a very engaging 18-day-old pig called Wilbur) and Emily entered in spite of the ubiquitous taxidermy (stoats, possums and weasels, the villains of New Zealand) and a good time was had by all.
Emily is on school holidays (a three-week break between terms two and three, of four), and has been hankering for snow, so we decided to make our first real expedition to the mountains since coming here. Last year when Sue Wine and her mother were here we got somewhat close, but it was sleeting and we didn't go far enough up to see snow. So this time we got a reservation at a grand old hotel (the Chateau Tongariro) and borrowed a child so Emily could have someone to pelt with snowballs, and we drove the three hours to Mt. Ruapehu (not mentioning to Emily that this is, actually, an active volcano that did erupt two years ago, but no one seems very worried about that, really). I will post some pictures. Manford stayed in the lovely hotel, while I drove the girls up the mountain for sledding and snow angels and snowman-building. Rachel, Emily's friend, had never seen the snow, and was thrilled. For some reason she was inspired to eat quite a lot of it. It is a different landscape than the Sierras or the Rockies--very rocky, a bit bleak if it weren't for the snow. Actually, the next mountain over (which you will see in the pictures, looking very classically volcanic) was Mt. Doom, for LOR fans. In two years, Emily will tramp the Tongariro Crossing, a famous all-day alpine trek that is described as "challenging" in the guide books...it is part of the Year 8 camp rite of passage at Southwell School. Parents are warned not to come unless they are "fit"...
Anyway, we made it down the mountain again and are home, have made phone contact with Joseph in Topeka, and getting ready for Manford's MRI tomorrow, starting another week of chemotherapy. He has been reducing his steroid dose gradually but successfully, so if the scan looks good he may be able to get off the steroids for the time being, which would be very good.
I will post some pictures, and try, again, to do better at keeping you posted...
Carrie
Sunday, June 6, 2010
Keeping on...
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
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
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