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
Thursday, May 6, 2010
Where we are now
It is May already, sunny and cold, in the afternoon maybe passing for spring, but genuinely Fall. We accomplished a happy birthday for Emily, complete with sleepover party, which Manford and I left to the happy ministrations of Laura, the 26-year-old ex-DJ housekeeper who has been saving my life weekly the last few months. It seems [that a good time was had by all (possible exception of Laura) and Manford and I had '[some sleep in Cambridge, the next nice little town down the road. Joseph also vacated the premises to a friend's house. Then we had Emily's real birthday on Monday, and Manford and I were able to go to the mall (thanks to the wheelchair) and he picked out a gold locket with a four leaf clover that she loved, as well as all the American treasures brought by Joan and Ross, Manford's sister and nephew who were here visiting for a week in April. I will post pictures from all of that--it was a good visit, especially when we all (all the grown-ups) went to Rotorua for a mineral soak and massage. It was very sad to see them go, though.
Manford has been struggling with all sorts of frustrating symptoms that make it difficult to be happy and believe in the good MRI results. He continues to have postural hypotension, though we have now discontinued lots of meds, including two of his Parkinson's meds. He is also really tired and weak much of the time, and wakes up in the middle of the night with nausea. He has terribly dry skin andThey did some blood work last week, and he had very high blood sugar (it is measured on some different scale here, so I won't bother to say how high), so we did a glucose tolerance test yesterday and are awaiting the results; he may have steroid-induced diabetes. If this can be treated, I suppose it might be good news because he might feel better. He is in the hospice inpatient centre right now, trying to figure out some of this and let me get some sleep. It is very nice there, much nicer than the hospital--a private room with TV and sliding door to a little garden. But I'd better go now, as he will be waiting for me. I will post pictures later.
Carrie
Manford has been struggling with all sorts of frustrating symptoms that make it difficult to be happy and believe in the good MRI results. He continues to have postural hypotension, though we have now discontinued lots of meds, including two of his Parkinson's meds. He is also really tired and weak much of the time, and wakes up in the middle of the night with nausea. He has terribly dry skin andThey did some blood work last week, and he had very high blood sugar (it is measured on some different scale here, so I won't bother to say how high), so we did a glucose tolerance test yesterday and are awaiting the results; he may have steroid-induced diabetes. If this can be treated, I suppose it might be good news because he might feel better. He is in the hospice inpatient centre right now, trying to figure out some of this and let me get some sleep. It is very nice there, much nicer than the hospital--a private room with TV and sliding door to a little garden. But I'd better go now, as he will be waiting for me. I will post pictures later.
Carrie
Thursday, April 15, 2010
Good News!
Manford had an MRI today--we were very worried, because we saw the oncologist yesterday and he was very concerned about the variety of symptoms Manford's been having over the last month (ie, difficulty walking, orthostatic hypotension, memory problems, word finding problems, weird numbness...), and decided to do a scan in spite of the fact that it might be ambiguous from the radiation, in order to try to decide whether and how to proceed with chemotherapy. We just had a very brief meeting with the doctor, who was running off to something, but was good enough to get it all done very quickly and tell us the results himself. He said it looked better than the previous scan, where there were several small tumors (he said two before, but apparently there were other smaller areas of concern); now some of them have disappeared, and the margin of the area (what does that mean...I think it is the area around the hole where the tumor was, where they worry about tumor cells still being there) is thinner (I don't know how they see this. we will have more time to talk about it next month), and generally he was very pleased and quite surprised. Manford is starting on the first of six monthly rounds of Temozolomide today, then; I think the hopeful thing is that the implication is that this tumor does respond to Temozolomide (which was given during radiation).
We are going out to dinner now to celebrate.
Carrie
We are going out to dinner now to celebrate.
Carrie
Saturday, April 3, 2010
Good Friday
Yesterday was Good Friday here, an actual holiday; in contrast to non-events like Halloween and Valentine's Day, Easter is big here, and is always associated with at least a four-day weekend, from Good Friday through Easter Monday. Both Good Friday and Easter Sunday are enforced as holidays--most stores are not allowed to be open (or they pay a fine), so the grocery store and mall were closed yesterday, and we had a quiet day at home with no appointments, no school, no running around, and it was Good.
Especially good because Manford seems to be doing better, having added one medicine and subtracted two (we had a house call from a very nice Canadian doctor who actually believes in discontinuing meds, rather than just piling them on), so that his blood pressure is higher and he is able to walk around without getting lightheaded. He walked around the house freestyle (without walker or cane) and walked outside for the first time in two weeks without wheelchair, to inspect my rearrangement of the mailbox, which is now at a rakish angle...
Joseph flew off to Christchurch Thursday night; actually, his camp is on the Banks Penninsula, which is about an hour outside Christchurch and is supposed to be beautiful, with rare dolphins and penguins and nice hills and bush. Not sure Joseph will appreciate all that, but we hope he is enjoying being with other Young Friends, being perhaps the youngest of them...
I guess I was thinking of Joseph on Thursday night as I was reading to Emily (Harry Potter, of course) and I fell asleep while reading, and kept on talking, much to Emily's surprise and confusion, because it had something to do with Joseph's breakfast at camp and safety precautions and didn't make a whole lot of sense...I came around to her saying "what are you talking about?!"...
And today Emily and I have been making Easter eggs, of the blown kind, and hardboiled, and sugar eggs. None of which they do here--they do Easter big time, but mainly this means lots of chocolate--huge, rugby-ball sized chocolate eggs and larger-than-life-sized bunnies, but no jelly beans, no egg dying kits, and I haven't been able to find any white eggs, so ours are all rather rich, dark colours, based on brown.
Monday we leave for the beach--we settled on going to Mount Maunganui (known to the locals as just "the Mount"), just an hour and a bit East of here, more of a beach town than the rugged New Zealand shore, but handier for eating, and doing things that are not dependent on good weather (which it might or might not be)--they have hot pools, and shops, and we are renting a two-bedroom apartment with two balconies with views of the ocean where Manford can take his sun and salt air.
We will be back on Thursday to meet Joseph, who will probably need several days of sleep and long showers to recover from his week of camp, but both kids have another week off school after that, as it is the break between term 1 (of 4) and term 2. Last year, this time, we were in Topeka, and still thinking of all Topeka (wait, is it still Google?) friends and others around the country and world...
Especially good because Manford seems to be doing better, having added one medicine and subtracted two (we had a house call from a very nice Canadian doctor who actually believes in discontinuing meds, rather than just piling them on), so that his blood pressure is higher and he is able to walk around without getting lightheaded. He walked around the house freestyle (without walker or cane) and walked outside for the first time in two weeks without wheelchair, to inspect my rearrangement of the mailbox, which is now at a rakish angle...
Joseph flew off to Christchurch Thursday night; actually, his camp is on the Banks Penninsula, which is about an hour outside Christchurch and is supposed to be beautiful, with rare dolphins and penguins and nice hills and bush. Not sure Joseph will appreciate all that, but we hope he is enjoying being with other Young Friends, being perhaps the youngest of them...
I guess I was thinking of Joseph on Thursday night as I was reading to Emily (Harry Potter, of course) and I fell asleep while reading, and kept on talking, much to Emily's surprise and confusion, because it had something to do with Joseph's breakfast at camp and safety precautions and didn't make a whole lot of sense...I came around to her saying "what are you talking about?!"...
And today Emily and I have been making Easter eggs, of the blown kind, and hardboiled, and sugar eggs. None of which they do here--they do Easter big time, but mainly this means lots of chocolate--huge, rugby-ball sized chocolate eggs and larger-than-life-sized bunnies, but no jelly beans, no egg dying kits, and I haven't been able to find any white eggs, so ours are all rather rich, dark colours, based on brown.
Monday we leave for the beach--we settled on going to Mount Maunganui (known to the locals as just "the Mount"), just an hour and a bit East of here, more of a beach town than the rugged New Zealand shore, but handier for eating, and doing things that are not dependent on good weather (which it might or might not be)--they have hot pools, and shops, and we are renting a two-bedroom apartment with two balconies with views of the ocean where Manford can take his sun and salt air.
We will be back on Thursday to meet Joseph, who will probably need several days of sleep and long showers to recover from his week of camp, but both kids have another week off school after that, as it is the break between term 1 (of 4) and term 2. Last year, this time, we were in Topeka, and still thinking of all Topeka (wait, is it still Google?) friends and others around the country and world...
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