I am hoping for a quiet New Year's Eve tonight, though that may be optimistic...on Christmas night, at 10:30, the neighbors started shooting off major fireworks, high in the sky booming and sending a rain of something (sparks? ash?) on our house so that I thought someone was spraying a hose at the window next to where Manford was sleeping. After listening for some time, I went over in my pajamas and asked them to be quieter (there was a party going on, also), and got a rude reply, but they did get quieter...so we will see.
The kids are at the Quaker Summer Gathering in Ngarauwahia, just north of Hamilton. I went up yesterday to take Joseph to lunch for his birthday, and it is a really nice camp with lots of activities, and they seem to be having fun.
Manford had a subcutaneous pump installed on Monday, after some advocacy, which is what we call begging and cajoling, right? on my part. I kept asking "what is the downside? are there clinical risks? why NOT do it?" because he was having to take 20-something pills a day, with increasing difficulty using a straw, and I was afraid he would choke. On Friday, when I first asked this, the big nurse in charge (in the sky, who I have never met) said no, because he could still swallow. No one could or would tell me why not do it if it could make him more comfortable, as I learned it had for our friend who is in similar straits. Then on Monday the nurses came and actually listened to me when I said I was afraid he would choke, and they may be in trouble with the big nursie at home, but it was a holiday and they didn't have to ask her. I have since gathered that the drawbacks are resourcewise, since they now have to come every day to load the pump. I didn't know this, and no one would say. Anyway, it has been helpful, as he quickly seemed much more comfortable and settled, though he slept much of the first couple of days. He was a bit more up and down yesterday, but still better than before.
Sarah left on Tuesday, and I hope is home by now...it was really good to have her.
Happy New Year's Eve Eve, for those on the other side of the dateline...
Carrie
Friday, December 31, 2010
Sunday, December 26, 2010
Boxing Day
I feel we really should be doing something with boxes, and we have plenty of leftovers, but don't think the deserving poor would really appreciate our scraps, and we don't have servants...It would not be a bad idea at all to box up the leftover toys in the family room, but no one has the energy for that...
Whereas Manford slept nearly all day yesterday, and all through the night, today he has been more wakeful and eating constantly all afternoon...strawberries (unfortunately dwindling in the garden), soup, jello, ice cream, bread, Christmas cake (fruitcake), mochi, more soup...It is helpful to have Sarah to do some of the feeding, both of him and of the hungry children...
It is cool, cloudy, lazy day. Emily has put together the train Santa brought to go around the Christmas tree, and it is in the hallway now...Joseph has gone to a friend's house to play video games.
I hope your Christmas was merry.
Carrie
Whereas Manford slept nearly all day yesterday, and all through the night, today he has been more wakeful and eating constantly all afternoon...strawberries (unfortunately dwindling in the garden), soup, jello, ice cream, bread, Christmas cake (fruitcake), mochi, more soup...It is helpful to have Sarah to do some of the feeding, both of him and of the hungry children...
It is cool, cloudy, lazy day. Emily has put together the train Santa brought to go around the Christmas tree, and it is in the hallway now...Joseph has gone to a friend's house to play video games.
I hope your Christmas was merry.
Carrie
Saturday, December 25, 2010
Merry Christmas (eve)
It's Christmas morning here, though, and we've made it through the excitement. Manford slept solidly from about 7 last night, through 6:30 stocking madness and Santa presents, Charlie playing happily with her new toy. He woke up briefly to eat a croissant and juice and take his myriad of morning pills, and went back to sleep through the present opening, so he still has a small pile of treats for when he wakes up. He hasn't slept this long in a long time, if ever, but he seems peaceful, so we are happy.
Happy Christmas to all, and to all a good night...
Happy Christmas to all, and to all a good night...
Wednesday, December 22, 2010
Almost Christmas
Defying expectations, Manford is still here, and looks like he will make it to Christmas. He is unable to get out of the bed at all, but this has made things simpler, in some ways--no more precarious transfers to the wheelchair or recliner. He is on oxycontin now, because of various increasing pains which may be directly or indirectly related to the cancer, and it is making him a bit fuzzy on reality...we have got a palliative care nursing agency coming every other night or so, and during the day for a few hours, and this is really helpful.
Two weeks ago the hospice nurse was trying to talk me into putting him into a nursing home, but I looked at what was available and couldn't send him to that hot concrete cell (the best face I could put it on was a monastic cell, but I am not sure that is the most accurate). But it spurred me to get more help, and that has been godsend. And my sister Sarah arrived last week for about 10 days, and she is also a great help, especially with the kids.
It is very hard to tell how much longer now; Manford is still wanting to eat, though not as much as a couple of weeks ago, when he was spurred to ravenousness by the steroids. He has trouble, intermittently, drinking from a straw, and with various motor tasks like turning in bed. He is ready to be done with it, and keeps saying goodbye, but his body is not finished. Our friend from the hospice art group, Glenn, who also has a brain tumor, and lives about five blocks from here, is in about the same condition; they also have children, six and fifteen, also trying to make it through Christmas.
Two weeks ago the hospice nurse was trying to talk me into putting him into a nursing home, but I looked at what was available and couldn't send him to that hot concrete cell (the best face I could put it on was a monastic cell, but I am not sure that is the most accurate). But it spurred me to get more help, and that has been godsend. And my sister Sarah arrived last week for about 10 days, and she is also a great help, especially with the kids.
It is very hard to tell how much longer now; Manford is still wanting to eat, though not as much as a couple of weeks ago, when he was spurred to ravenousness by the steroids. He has trouble, intermittently, drinking from a straw, and with various motor tasks like turning in bed. He is ready to be done with it, and keeps saying goodbye, but his body is not finished. Our friend from the hospice art group, Glenn, who also has a brain tumor, and lives about five blocks from here, is in about the same condition; they also have children, six and fifteen, also trying to make it through Christmas.
Sunday, December 5, 2010
what I forgot to say
A couple of weeks ago, someone broke into our house and took our laptops--the computers themselves are no great loss, as they were getting quite decrepit, in fact were sitting out in the living room because I was going to back them up onto the new external hard drive we had just gotten because I was afraid either or both were going to expire, with all our pictures and music on them. But I didn't back them up. Let that be a lesson to you.
I have some pictures of Manford because I had started to make a powerpoint slide show with some of them, and saved it on a memory stick. But most of our pictures for the last four years are gone. If any of you have pictures from your visits here, or our visits there, and could send them to me (maybe on disks if there are more that a few), I would really appreciate it. And I will back them up.
I have some pictures of Manford because I had started to make a powerpoint slide show with some of them, and saved it on a memory stick. But most of our pictures for the last four years are gone. If any of you have pictures from your visits here, or our visits there, and could send them to me (maybe on disks if there are more that a few), I would really appreciate it. And I will back them up.
December already
We will decorate our tree today, though I can't believe Christmas will really come this year, and can't predict what it will be like. Just after Christmas is the annual weeklong Quaker Summer Gathering, which is to be held just a half hour north of here. Joseph and I have been on the organizing committee, though me just nominally the last six months. Joseph is representative of/to Young Friends; he can go on his own, supposedly, and bunks with the YF's this year for the first time. If I can't go, Emily will go with her local honorary grandmothers, Joy Rising and Mary Rose.
Joseph has started a volunteer job, three afternoons a week, helping sort, clean, and move things around at the Hospice Shops (second-hand stuff to support Hospice). He seemed happy with this after the first day, though it was hot, since he has chosen to work in the afternoons...they close down, like 3/4 of New Zealand, between December 21 and January 10.
Emily had her school "Panto" this week--this is apparently a British tradition--the Christmas Pantomime. As she has been rehearsing and talking about this over the last few months, I have been puzzling, becuase it clearly didn't seem to be what I would think of as a pantomime...she kept singing the songs, and talking about character's lines...it was finally clarified for me by a British friend at our Thanksgiving dinner. It is an audience participation kind of play, which traditionally includes lots of booing the villians and cheering the heroes, actors playing the opposite gender, songs, and apparently always one character who actually is a mime. Emily was a cat and a cheerleader in this one, which was a version of Dick Whittington, in which he comes to Southwell school...They did a good job. I tried to take a few pictures with my iphone but they did not come out well...Emily now just has 3 1/2 days left of school.
Manford has been struggling with a urinary tract infection, and more weakness; he is tired of it all and discouraged. He did get up and join us for Thanksgiving for a few minutes, and talked with his sister Joan on the phone well that day. He appreciates your thoughts and prayers.
Joseph has started a volunteer job, three afternoons a week, helping sort, clean, and move things around at the Hospice Shops (second-hand stuff to support Hospice). He seemed happy with this after the first day, though it was hot, since he has chosen to work in the afternoons...they close down, like 3/4 of New Zealand, between December 21 and January 10.
Emily had her school "Panto" this week--this is apparently a British tradition--the Christmas Pantomime. As she has been rehearsing and talking about this over the last few months, I have been puzzling, becuase it clearly didn't seem to be what I would think of as a pantomime...she kept singing the songs, and talking about character's lines...it was finally clarified for me by a British friend at our Thanksgiving dinner. It is an audience participation kind of play, which traditionally includes lots of booing the villians and cheering the heroes, actors playing the opposite gender, songs, and apparently always one character who actually is a mime. Emily was a cat and a cheerleader in this one, which was a version of Dick Whittington, in which he comes to Southwell school...They did a good job. I tried to take a few pictures with my iphone but they did not come out well...Emily now just has 3 1/2 days left of school.
Manford has been struggling with a urinary tract infection, and more weakness; he is tired of it all and discouraged. He did get up and join us for Thanksgiving for a few minutes, and talked with his sister Joan on the phone well that day. He appreciates your thoughts and prayers.
Tuesday, November 16, 2010
November
November, in New Zealand, at least this year, is beautiful spring weather. We have strawberries already, escaping from the raised bed and enough to share with the birds and slugs, though I may try to do something about that...
Joseph is in the midst of big exams; he will be done with all of them in a week, and done with his penultimate year of school. Almost time to really think about college. Almost.
Emily has almost four more weeks of school, which seem to consist mainly of sports and plays and fun things. She is happy at school right now, with two or three good friends who provide solace from the teasing of the boys...and she thinks maybe the teasing is better because they feel sorry for her now, and she is taking advantage of that. She is very open in talking about Manford's illness, and her friends are supportive. She and I went last night to a magic show, which we got tickets to via Rainbow Place, the programme within Hospice for children. The performers were Americans--one traditional magician and one more comic one; they were affiliated with the Lions somehow, doing a series of performances in New Zealand. We both enjoyed it muchly, though it was past our bedtime.
Manford is in hospice this week, enjoying their very kind and thoughtful staff who don't mind his calling in the middle of the night...He was there last week for a few days, then got very homesick and came home over the weekend, then wished he was back there, and his wish was granted. He will probably be there until Friday. He is frustrated with being so tired, but not in pain. He does appreciate the messages he has gotten from people, and knows people are thinking of him.
Last Friday night we had a movie night at Rainbow Place (which has really nice facilities, including a room with lots of beanbag chairs and a TV) for the families of the brain tumor support group; I will post a picture. I managed to convince Joseph to come (there were two other teenaged boys there; Emily took now persuading), and Manford came and sat through the whole movie (How to Train your Dragon).
Meanwhile, we are getting the yard all spruced up, and I am working on Christmas shopping, suddenly realizing that it is coming, though I can't really associate Christmas with summer and so it is still very confusing.
Merry Thanksgiving and stay warm, or cool, or whatever is appropriate.
Joseph is in the midst of big exams; he will be done with all of them in a week, and done with his penultimate year of school. Almost time to really think about college. Almost.
Emily has almost four more weeks of school, which seem to consist mainly of sports and plays and fun things. She is happy at school right now, with two or three good friends who provide solace from the teasing of the boys...and she thinks maybe the teasing is better because they feel sorry for her now, and she is taking advantage of that. She is very open in talking about Manford's illness, and her friends are supportive. She and I went last night to a magic show, which we got tickets to via Rainbow Place, the programme within Hospice for children. The performers were Americans--one traditional magician and one more comic one; they were affiliated with the Lions somehow, doing a series of performances in New Zealand. We both enjoyed it muchly, though it was past our bedtime.
Manford is in hospice this week, enjoying their very kind and thoughtful staff who don't mind his calling in the middle of the night...He was there last week for a few days, then got very homesick and came home over the weekend, then wished he was back there, and his wish was granted. He will probably be there until Friday. He is frustrated with being so tired, but not in pain. He does appreciate the messages he has gotten from people, and knows people are thinking of him.
Last Friday night we had a movie night at Rainbow Place (which has really nice facilities, including a room with lots of beanbag chairs and a TV) for the families of the brain tumor support group; I will post a picture. I managed to convince Joseph to come (there were two other teenaged boys there; Emily took now persuading), and Manford came and sat through the whole movie (How to Train your Dragon).
Meanwhile, we are getting the yard all spruced up, and I am working on Christmas shopping, suddenly realizing that it is coming, though I can't really associate Christmas with summer and so it is still very confusing.
Merry Thanksgiving and stay warm, or cool, or whatever is appropriate.
Saturday, October 23, 2010
another month
Again, a month has slipped by. We have been busy. We did go to Auckland during the school holidays, and stayed in a really nice apartment on the waterfront for three days. We took a harbor tour, and went to the maritime museum next door, and on the way there (this may have been the highlight...well, one of them) we went to the American store, which we had only recently learned of, where we bought a hundred dollars' worth of comfort food...Planter's Peanuts, Pop Tarts, Life cereal, Kraft Mac & Cheese, graham crackers, Wheat Thins, and candy corn!
It went well enough that I thought Manford and I could attempt a trip to the South Island--he had said he would like to see whales, and there is a place there (Kaikoura) that is famous for whale-watching, so this last week, we went--got a locum grandparentis (a very good woman from the Friends Meeting here--from Maine, actually--who has house and dog and bunny-sat for us, so it was just another step...), and flew to Christchurch (which had a 5.0 aftershock from last month's earthquake an hour before we landed), and drove 2 1/2 hours to Kaikoura, where we stayed for three nights. It was beautiful--snowy mountains backing the bay--but the sea was too rough to go out whale watching, so we got massages instead, and had a very good, quiet time together.
Manford is not in pain or major discomfort, just more and more tired. They put him on Ritalin, actually, just before we went, for the fatigue; it seems to help a little bit. He can sit up for a meal, but can't really do restaurants because of the wait, so we had a place with room for eating, and I got lots of takeaways. In Auckland, Joseph pushed him around in his wheelchair, but in Kaikoura, we didn't really go anywhere that was a distance, and he can walk from the car to a building. We did find a nice gallery where he got Christmas presents for the kids. Don't tell them. I don't think they read the blog.
I have been on a listserv for caregivers of brain tumor patients, and have realized that we have much to be grateful for. He doesn't have major pain, or seizures, or any of the dramatic personality change or difficult behaviors that can come with frontal lobe tumors. He is himself, but much more tired and dependent on me for decisions of all sorts (when, where, and how to put his arm in his shirt, etc). He is still trying to think of others all the time, and trying not to be a bother...but he is eating like a horse, every couple of hours.
We had a good visit with the palliative care doctor last week--he is Canadian--he suggested trying the Ritalin, and is very available. He looked at the notes from the oncologist, and confirmed for me what I wasn't sure I remembered, or understood, clearly from the last meeting with him. He said to me (I think) that he though Manford had one or two months to live; he put in the notes that he thinks he is in his last three months of life. Things can change quickly, because the tumor can grow quickly. One woman in our support group had a recurrence diagnosed, and died two weeks later. So we are trying to enjoy everything we can, now, and I have stopped work for now, and my colleagues are very supportive (some are more help than others...but they all say they want to help).
I will go and try to post pictures.
It went well enough that I thought Manford and I could attempt a trip to the South Island--he had said he would like to see whales, and there is a place there (Kaikoura) that is famous for whale-watching, so this last week, we went--got a locum grandparentis (a very good woman from the Friends Meeting here--from Maine, actually--who has house and dog and bunny-sat for us, so it was just another step...), and flew to Christchurch (which had a 5.0 aftershock from last month's earthquake an hour before we landed), and drove 2 1/2 hours to Kaikoura, where we stayed for three nights. It was beautiful--snowy mountains backing the bay--but the sea was too rough to go out whale watching, so we got massages instead, and had a very good, quiet time together.
Manford is not in pain or major discomfort, just more and more tired. They put him on Ritalin, actually, just before we went, for the fatigue; it seems to help a little bit. He can sit up for a meal, but can't really do restaurants because of the wait, so we had a place with room for eating, and I got lots of takeaways. In Auckland, Joseph pushed him around in his wheelchair, but in Kaikoura, we didn't really go anywhere that was a distance, and he can walk from the car to a building. We did find a nice gallery where he got Christmas presents for the kids. Don't tell them. I don't think they read the blog.
I have been on a listserv for caregivers of brain tumor patients, and have realized that we have much to be grateful for. He doesn't have major pain, or seizures, or any of the dramatic personality change or difficult behaviors that can come with frontal lobe tumors. He is himself, but much more tired and dependent on me for decisions of all sorts (when, where, and how to put his arm in his shirt, etc). He is still trying to think of others all the time, and trying not to be a bother...but he is eating like a horse, every couple of hours.
We had a good visit with the palliative care doctor last week--he is Canadian--he suggested trying the Ritalin, and is very available. He looked at the notes from the oncologist, and confirmed for me what I wasn't sure I remembered, or understood, clearly from the last meeting with him. He said to me (I think) that he though Manford had one or two months to live; he put in the notes that he thinks he is in his last three months of life. Things can change quickly, because the tumor can grow quickly. One woman in our support group had a recurrence diagnosed, and died two weeks later. So we are trying to enjoy everything we can, now, and I have stopped work for now, and my colleagues are very supportive (some are more help than others...but they all say they want to help).
I will go and try to post pictures.
Saturday, September 25, 2010
MRI news
Time slips by; I did not realize I had not written since before the arrival of Sirius Black Monster, Emily's new bunny, who is very friendly and working out well. The kids are both out of school now for their between-term holidays; Joseph has been having practice exams the last two weeks, so has hardly been in school, really.
Manford had an MRI this week, and we met with the oncologist next day for the results, which were not encouraging. He has growth in three areas that I guess were suspicious before, and now seem to be tumors. One is where the first tumor was taken out, in the middle of the right frontal lobe; one is anterior (frontmost) frontal, and one is temporal (all right side). This helps to explain why he couldn't get off steroids, and has been having a bit more trouble lately. There is really no active treatment that has any reasonable chance of helping, so we are seeing the palliative care team next week. I will be trying to decrease work further (from two days a week to maybe just essential meeting, and what is essential?).
We did get the hot tub finished about two weeks ago, and it has been great for the kids and me; Joseph has been in it every night and actually talks to me sometimes...Manford has had difficulty getting in and out; we got a rail put in this week, but it was still a bit stressful getting out, so we'll have to see. The OT may have some suggestions.
It is spring, with many pretty flowering trees, but also rain, rain, rain...
We are going to try to spend a few days in Auckland over the next two weeks; we were thinking of going to Australia, but I don't think that is realistic--but Auckland is close and there are many things we haven't seen, and if the weather clears, maybe a dolphin and whale tour.
We appreciate your thoughts and prayers.
Manford had an MRI this week, and we met with the oncologist next day for the results, which were not encouraging. He has growth in three areas that I guess were suspicious before, and now seem to be tumors. One is where the first tumor was taken out, in the middle of the right frontal lobe; one is anterior (frontmost) frontal, and one is temporal (all right side). This helps to explain why he couldn't get off steroids, and has been having a bit more trouble lately. There is really no active treatment that has any reasonable chance of helping, so we are seeing the palliative care team next week. I will be trying to decrease work further (from two days a week to maybe just essential meeting, and what is essential?).
We did get the hot tub finished about two weeks ago, and it has been great for the kids and me; Joseph has been in it every night and actually talks to me sometimes...Manford has had difficulty getting in and out; we got a rail put in this week, but it was still a bit stressful getting out, so we'll have to see. The OT may have some suggestions.
It is spring, with many pretty flowering trees, but also rain, rain, rain...
We are going to try to spend a few days in Auckland over the next two weeks; we were thinking of going to Australia, but I don't think that is realistic--but Auckland is close and there are many things we haven't seen, and if the weather clears, maybe a dolphin and whale tour.
We appreciate your thoughts and prayers.
Saturday, September 4, 2010
on solid ground
You may have heard about the big (7.1) earthquake in Christchurch today--our thoughts are with them, but be assured we are far away from Christchurch, and Hamilton is one of the safest, most earthquake, volcano, tsunami-free zones in New Zealand.
We did have a lovely spring day today, with sun and a breeze, such that our patio finally dried out enough for the paving man to come and finish it! hurrah! He has been stymied for over a week by daily rain. We should have the hot tub within a few days.
We are thinking of the Wines, who must be in full wedding prep mode. We hope all goes wonderfully on Monday.
Manford has had an up and down week, good visit to the doctor on Tuesday, off steroids a week, then on Friday up at 4 am and unsettled, confused, difficulty walking and saying what he wanted to say, memory problems, and headaches, so back on steroids now, and better, but a bit frustrated. Chemotherapy postponed slightly to see how he does over the weekend.
And tomorrow Emily and I will go fetch the bunny, whose name may be Thunder, if it suits.
We did have a lovely spring day today, with sun and a breeze, such that our patio finally dried out enough for the paving man to come and finish it! hurrah! He has been stymied for over a week by daily rain. We should have the hot tub within a few days.
We are thinking of the Wines, who must be in full wedding prep mode. We hope all goes wonderfully on Monday.
Manford has had an up and down week, good visit to the doctor on Tuesday, off steroids a week, then on Friday up at 4 am and unsettled, confused, difficulty walking and saying what he wanted to say, memory problems, and headaches, so back on steroids now, and better, but a bit frustrated. Chemotherapy postponed slightly to see how he does over the weekend.
And tomorrow Emily and I will go fetch the bunny, whose name may be Thunder, if it suits.
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
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...
Sunday, March 21, 2010
Sunday
It's Sunday here, early morning, quite a bit cooler these days as it starts to feel like Fall will really come. Joseph has finally decided to respond to the nudging we've been administering for almost three years and get involved in a play at school--he used to do lights and sound at Topeka Collegiate, but I think you have to work your way up to that, so he is doing backstage crew for Spamalot (which sounds like fun) and then, next term, also for Merchant of Venice. But now it turns out that Spamalot is being performed at the lovely Performing Arts Centre at Emily's school, which is several kilometers away, and he has a schedule of rehearsals and performances we're supposed to get him to every day over the next two weeks...I should have let him take the driving test in January, but it was a bad time for that...even the kids his age who have licenses have restricted ones so that they cannot give their friends rides--which is probably good, but not convenient.
Emily tried out for her school's "opera" (musical), Bye Bye Birdie, but it won't be until next term (which starts mid-April), and I think it doesn't have performances until the next one after that. She is hoping her American accent will stand her in good stead.
Manford is struggling a bit more right now with low blood pressure and difficulty walking. We spend most of the day on Friday with the nice oncology people as they gave him IV fluids, thinking he might be dehydrated, but that doesn't seem to be it and he is still at 90/60 sitting down, and sometimes quite wobbly when he tries to stand up. At least, when they did his blood work, his immune system is looking very good, so maybe all our good eating is helping something.
I am going to take myself and Charlie for a walk.
Carrie
Emily tried out for her school's "opera" (musical), Bye Bye Birdie, but it won't be until next term (which starts mid-April), and I think it doesn't have performances until the next one after that. She is hoping her American accent will stand her in good stead.
Manford is struggling a bit more right now with low blood pressure and difficulty walking. We spend most of the day on Friday with the nice oncology people as they gave him IV fluids, thinking he might be dehydrated, but that doesn't seem to be it and he is still at 90/60 sitting down, and sometimes quite wobbly when he tries to stand up. At least, when they did his blood work, his immune system is looking very good, so maybe all our good eating is helping something.
I am going to take myself and Charlie for a walk.
Carrie
Wednesday, March 17, 2010
Done!
Manford had his last radiation treatment yesterday, and we celebrated with carrot cake. We also had a very nice visit on Monday from Dr Hsu and his wife, old friends from Topeka who've been living in California the last seven years. They were looking exactly the same--not sure I can say the same for us, but Manford is doing well, just tired. His main job now is to rest and recover; we hear it may take a few weeks to get some energy back. In a month, he will have five days of chemotherapy, then do that every month for six months.
We appreciate all the messages, thoughts and prayers coming our way. I'll post a couple of pictures.
We appreciate all the messages, thoughts and prayers coming our way. I'll post a couple of pictures.
Saturday, March 13, 2010
I see it has been ten days since I wrote--I'm sorry. I guess no news is good news--we have been plodding along, really, going to daily radiation and various other appointments, and the days have disappeared. Manford is tolerating the radiation well--tired, but not as bad as I had expected, and he only has two days left, Monday and Tuesday next week. Then he has a month break, and starts five days of chemotherapy per month for six months--but that is still oral medication, and he hasn't seemed bothered at all by the dose he's been on during the radiation. That dose will be higher, but we are hopeful it won't be too hard on him. We have to wait three months to know the effects of the radiation and chemo, since the radiation can produce ambiguous findings on an MRI if the MRI is done too soon after treatment.
So, Emily had a good time at camp, and we survived her absence and enjoyed the week of not going back and forth to school. This week she had "swimming sports day," which seems to be a New Zealand tradition where the whole school (or part of it, years 5 and up) goes to a pool and swims races all day; they are divided into houses (yes, like Hogwarts, but the sorting hat is probably computerized), and they compete against each other. Emily is in York (they are all named after British cathedrals). Her house colour is black (inconveniently on hot sunny days, as they wear their house colour shirts for sport, which is PE). If I can find the cable to put my photos on the computer sometime soon, I'll put up a picture from the day.
Joseph and I had an American lapse; we got a phone call to say that a computer game he had ordered was available at EBgames, so I thought "oh, good, we'll just go after dinner and pick it up." We got to the mall and got a really good parking spot (this should have been a clue) and were into the mall before we encountered barriers and darkened mall...having forgotten that most shopping centres close at 6, except for the movie theatres. Somehow they don't have the need to shop all the time here, and we've generally gotten along without it...Oh well. He had to wait a day to fight Napoleon's battles for him (he is trying to convince me that this is educational).
Emily has the school rats (Rattie and Smoky) this weekend, and she is enthralled; fortunately, they are very patient rats and seem relatively unflappable and not interested in escape. I hope I have not spoken too soon. They are staying in the garage, where we have found a use for the ping-pong table, after all...Emily and her friend were making an obstacle course for them. She insists they will not jump off the table. Charlie is wondering what that intriguing smell is...
It is starting to feel like Fall, with cool nights and sunny days, actually hoping for a bit of rain. We are still picking strawberries from the plants that are trying to take over one of our raised beds, and I am battling a rhubarb plant that is dominating the other one. We got a juicer, and have been making nice healthy, tastier-than-they-sound drinks like carrot-celery-beet juice, and I am trying to find a use for rhubarb juice. It is a bit tart...
Manford is worrying that the girls are going to drive the rats to distraction, and I do hear screams, so maybe I'd better check this out...
Carrie
So, Emily had a good time at camp, and we survived her absence and enjoyed the week of not going back and forth to school. This week she had "swimming sports day," which seems to be a New Zealand tradition where the whole school (or part of it, years 5 and up) goes to a pool and swims races all day; they are divided into houses (yes, like Hogwarts, but the sorting hat is probably computerized), and they compete against each other. Emily is in York (they are all named after British cathedrals). Her house colour is black (inconveniently on hot sunny days, as they wear their house colour shirts for sport, which is PE). If I can find the cable to put my photos on the computer sometime soon, I'll put up a picture from the day.
Joseph and I had an American lapse; we got a phone call to say that a computer game he had ordered was available at EBgames, so I thought "oh, good, we'll just go after dinner and pick it up." We got to the mall and got a really good parking spot (this should have been a clue) and were into the mall before we encountered barriers and darkened mall...having forgotten that most shopping centres close at 6, except for the movie theatres. Somehow they don't have the need to shop all the time here, and we've generally gotten along without it...Oh well. He had to wait a day to fight Napoleon's battles for him (he is trying to convince me that this is educational).
Emily has the school rats (Rattie and Smoky) this weekend, and she is enthralled; fortunately, they are very patient rats and seem relatively unflappable and not interested in escape. I hope I have not spoken too soon. They are staying in the garage, where we have found a use for the ping-pong table, after all...Emily and her friend were making an obstacle course for them. She insists they will not jump off the table. Charlie is wondering what that intriguing smell is...
It is starting to feel like Fall, with cool nights and sunny days, actually hoping for a bit of rain. We are still picking strawberries from the plants that are trying to take over one of our raised beds, and I am battling a rhubarb plant that is dominating the other one. We got a juicer, and have been making nice healthy, tastier-than-they-sound drinks like carrot-celery-beet juice, and I am trying to find a use for rhubarb juice. It is a bit tart...
Manford is worrying that the girls are going to drive the rats to distraction, and I do hear screams, so maybe I'd better check this out...
Carrie
Wednesday, March 3, 2010
End of summer
It seems like it's been years since Christmas, and then I can't believe it's already March. They measure seasons the simple way here--summer starts on December 1, and Autumn starts on March 1, so I guess this is autumn, though it is hard to tell. It was a bit cool and rainy this morning (maybe 65), but it is sunny this afternoon, and might reach what is considered awfully hot here, at 80 or so. Joseph gets off school early on Wednesdays (to study...) and so is having a bunch of people over to play Dungeons and Dragons, so we are bracing for the onslaught of 16-year-old boys right now...they are nice kids, though, and I think Joseph is reveling in being the only child, as Emily is off at camp.
Camp is a bit upside-down, too; kids don't go to summer camp in the summer. They go on holiday with their families. Then they go to camp with school. Emily's school all goes in the same week, about a month into school. Last year they went to Wellington (the capital) and had a very civilized camp going to museums and making their own news show. This year, they have a more traditional camp at Lake Taupo, about two hours from here, and will be doing kayaking and archery and high ropes (she is leery of this) and stuff like that. She left on Monday, and will be back on Friday.
Manford is doing well; we have been taking a short walk most nights with Charlie, and he has not been too tired from the radiation yet. We're almost halfway done, now, and I am pretty sure we'll be ready not to be going to the hospital every day. We had a good meeting yesterday with a woman who runs an organization to support cancer patients and provide information about complementary treatments. I am looking for the ideal beach spot to escape for a few days in April, while Joseph is gone (to Young Friends camp---ok, so there are some non-school camps) and Emily is off of school. I want somewhere we can see the ocean from the deck, take walks on the beach with Emily, and there is food nearby so I don't have to cook all the time. I will poll my New Zealand friends for suggestions.
Joseph is going to the Banks Penninsula, near Christchurch, for this Young Friends camp over Easter. He has previously been a Junior Young Friend, but now he has moved on to be YF, which is 16 to 40! this is a bit scary for Mom, but he is keen to go...He is also keen to go to the US in July, and we are working on figuring out that trip, in which he will probably visit Topeka, maybe Chicago, and wander around the West Coast with my sister looking at colleges. Ok, that is scary, too. But we are brave.
Carrie
Camp is a bit upside-down, too; kids don't go to summer camp in the summer. They go on holiday with their families. Then they go to camp with school. Emily's school all goes in the same week, about a month into school. Last year they went to Wellington (the capital) and had a very civilized camp going to museums and making their own news show. This year, they have a more traditional camp at Lake Taupo, about two hours from here, and will be doing kayaking and archery and high ropes (she is leery of this) and stuff like that. She left on Monday, and will be back on Friday.
Manford is doing well; we have been taking a short walk most nights with Charlie, and he has not been too tired from the radiation yet. We're almost halfway done, now, and I am pretty sure we'll be ready not to be going to the hospital every day. We had a good meeting yesterday with a woman who runs an organization to support cancer patients and provide information about complementary treatments. I am looking for the ideal beach spot to escape for a few days in April, while Joseph is gone (to Young Friends camp---ok, so there are some non-school camps) and Emily is off of school. I want somewhere we can see the ocean from the deck, take walks on the beach with Emily, and there is food nearby so I don't have to cook all the time. I will poll my New Zealand friends for suggestions.
Joseph is going to the Banks Penninsula, near Christchurch, for this Young Friends camp over Easter. He has previously been a Junior Young Friend, but now he has moved on to be YF, which is 16 to 40! this is a bit scary for Mom, but he is keen to go...He is also keen to go to the US in July, and we are working on figuring out that trip, in which he will probably visit Topeka, maybe Chicago, and wander around the West Coast with my sister looking at colleges. Ok, that is scary, too. But we are brave.
Carrie
Thursday, February 25, 2010
Day Three
We got to the radiation waiting room and were intercepted by the doctor, who sat with us and told us that Manford's CTscan from last Friday showed two new, small tumors near the old tumor site. The tumor is a very active kind, with 30% of cells growing, according to the pathology report; that is very high. The neurosurgeon thinks it would be more risky than not to do surgery at this point, particularly as it would delay the radiation/chemo further. They are replanning the radiation at a higher dose and slightly larger area, for three weeks instead of six. He will continue the temozolomide. According to the doctor, the aim of the radiation is to stop the tumors growing; the chemotherapy has a chance of shrinking them.
We are still processing this unwelcome news; Manford seems to be doing ok; they have increased his steroid dose a bit.
That's all I can say at this point. There is no poetry here at the moment, but I suppose it will come.
Carrie
We are still processing this unwelcome news; Manford seems to be doing ok; they have increased his steroid dose a bit.
That's all I can say at this point. There is no poetry here at the moment, but I suppose it will come.
Carrie
Tuesday, February 23, 2010
One down
Manford had his first radiation session yesterday, and it all went fine, though we were there a couple of hours longer than usual to do initial blood work and to try to talk to the doctor about the steriods...but we got the schedule of the next six weeks, and found our way to where we go, and are getting the routine down. His chemotherapy at this point is Temozolomide at a fairly low dose, which is intended to enhance the effect of radiation. It is just a pill (well, three pills, to make the correct dose) he takes an hour before treatment. He is also taking some antinausea medicine, but it may not be necessary in the long run--we'll see.
I made the mistake of sending e-mails to a couple of private college counselors over the weekend, trying to figure out the college selection and application process with Joseph, with no one here who really has any idea about how it works, and wondering how to explain the New Zealand system (which is very different) in college applications...last night one very pushy guy called and talked to me for a half hour straight without doing any discernable listening. I think he asked a couple of questions, but never stopped to hear an answer. If anyone knows a thoughtful college counselor who might listen and think about our specific situation, I would appreciate hearing their name...
Joseph is planning a trip to the US by himself in July--to visit friends and family and colleges, but mostly friends.
Carrie
I made the mistake of sending e-mails to a couple of private college counselors over the weekend, trying to figure out the college selection and application process with Joseph, with no one here who really has any idea about how it works, and wondering how to explain the New Zealand system (which is very different) in college applications...last night one very pushy guy called and talked to me for a half hour straight without doing any discernable listening. I think he asked a couple of questions, but never stopped to hear an answer. If anyone knows a thoughtful college counselor who might listen and think about our specific situation, I would appreciate hearing their name...
Joseph is planning a trip to the US by himself in July--to visit friends and family and colleges, but mostly friends.
Carrie
Saturday, February 20, 2010
Hot pools and sheep shows
We did it--we escaped for nearly 24 hours to Rotorua, just over an hour away, where they are famous for healing hot pools (too bad they smell of sulphur, but there are some advantages to losing your sense of smell, as Manford has, partly--though even he could smell this...) and tourist activities for all tastes. We did not indulge in any bungee jumping or zorbing (rolling down a hill in a giant blow-up ball), but we did eat a nice dinner, soak in the pool overlooking the lake, go to bed very relaxed, and in the morning went to the famous agrodome, where they have a silly show for city people where they sheer a sheep and milk a cow and herd ducks and goof around a lot--we are enough city that we enjoyed it, and it was a beautiful, cool and sunny morning, and we had a good lunch and came home. The children fared well in our absence, Joseph enjoying being at home alone, and Emily with a friend.
Manford starts radiation and chemotherapy on Monday--we have about $10,000 worth of pills in the cupboard, the first month's supply, which cost us $6. Can't complain about that side of it. He has been tapering off steroids (which help to control swelling in the brain) the last few days, maybe a bit too fast, as he has been struggling a bit more today, but generally is doing very well.
Now I'm off to read Harry Potter to Emily.
Carrie
Manford starts radiation and chemotherapy on Monday--we have about $10,000 worth of pills in the cupboard, the first month's supply, which cost us $6. Can't complain about that side of it. He has been tapering off steroids (which help to control swelling in the brain) the last few days, maybe a bit too fast, as he has been struggling a bit more today, but generally is doing very well.
Now I'm off to read Harry Potter to Emily.
Carrie
Tuesday, February 16, 2010
walking uphill
Tuesday here, and yesterday we had an appointment with the oncologist again--he spent about an hour talking with us, explaining about the possible and probable effects of the radiation and chemotherapy. He is very clear and thoughtful, and careful to try to explain well. He said the recent CTscan showed that the surgeon did a really good job, and there is no visible tumor left, which is good. They have a complicated planning process for the radiation, and he showed us that the edge of the tumor is a bit close to the eye socket, and there is some chance that the radiation will damage Manford's tear ducts on one side, but that doesn't sound so bad. He will start on Monday, and have six weeks of weekday radiation and six solid weeks of chemotherapy, which is just a daily capsule, along with some antinausea medication. I have been reading about various other things that could be added on to enhance treatment, and getting myself all confused, but will talk with the doctor about the options; I think he will listen. We plan to go to Rotorua, an hour away, for a night away at a hot pool spa, either Friday or Saturday night, depending on when they can do the pre-treatment MRI.
The kids are holding up ok; Emily picks up on anyone's malaise, and was home from school today with a bug, but really likes her teacher and has been officially appointed rat monitor. Joseph has gotten into Cambridge English and Math, which are kind of like AP classes, with a special extra exam (great fun), and an actual text book for math (ok, it's called "maths" here) that is called "Pure Mathematics" because, Joseph says, there are no pictures. There are definitely no pictures and it looks like serious math. Very few classes use text books here--I think there isn't a bit enough market to write texts just for the New Zealand curriculum, which has just been revised, and they make do with a variety of resources. For Cambridge English he gets to read Jane Eyre and Twelfth Night and The Importance of Being Ernest, along with some poetry. Real high school stuff--he will not appreciate it, but he will have done it. None of this Scarlett Letter or the Crucible American stuff.
Manford and Emily and Charlie and I walked uphill (and over hill) up the street about four blocks each way today, which is a new record, and the next goal is the cheese shop which is just a bit farther. Manford is walking with just a cane now, very distinguished, but we need to get a nicer one, maybe with a flask in it...I'll look on e-bay. But now, Emily is edging toward bedtime and we will start the Prisoner of Azkaban, again.
Carrie
The kids are holding up ok; Emily picks up on anyone's malaise, and was home from school today with a bug, but really likes her teacher and has been officially appointed rat monitor. Joseph has gotten into Cambridge English and Math, which are kind of like AP classes, with a special extra exam (great fun), and an actual text book for math (ok, it's called "maths" here) that is called "Pure Mathematics" because, Joseph says, there are no pictures. There are definitely no pictures and it looks like serious math. Very few classes use text books here--I think there isn't a bit enough market to write texts just for the New Zealand curriculum, which has just been revised, and they make do with a variety of resources. For Cambridge English he gets to read Jane Eyre and Twelfth Night and The Importance of Being Ernest, along with some poetry. Real high school stuff--he will not appreciate it, but he will have done it. None of this Scarlett Letter or the Crucible American stuff.
Manford and Emily and Charlie and I walked uphill (and over hill) up the street about four blocks each way today, which is a new record, and the next goal is the cheese shop which is just a bit farther. Manford is walking with just a cane now, very distinguished, but we need to get a nicer one, maybe with a flask in it...I'll look on e-bay. But now, Emily is edging toward bedtime and we will start the Prisoner of Azkaban, again.
Carrie
Friday, February 12, 2010
Rats
I finally lost patience and called the clinical trials nurse around midday Thursday, and she said that she had been meaning to call...the powers that be in Geneva have apparently decided that gliosarcoma is not included in the clinical trial Manford had hoped to participate in. The doctor called later that day, and he sounded quite disappointed and frustrated, too, but will meet with us on Monday to plan standard treatment, which, as I understand it, will be six weeks of radiation and Temozolomide, then follow-up treatment with Temozolomide for six months. I guess the advantage is they can't complain if we try whatever else might seem to work (e.g., blueberries, visualization, lots of hot mineral spas like they have down every road here, we'll see).
The other rats are that Emily asked, very tentatively, for permission to be a rat monitor...I think this means she will help to take care of the pet rats at school, and occasionally bring them home for the weekend. She didn't think I would approve, but I said I'm a psychologist with a long history of rats...maybe this is a good compromise pet. She has been longing for her own pet for years (Charlie doesn't count), and the worm farm doesn't seem to be filling that role.
The other rats are that Emily asked, very tentatively, for permission to be a rat monitor...I think this means she will help to take care of the pet rats at school, and occasionally bring them home for the weekend. She didn't think I would approve, but I said I'm a psychologist with a long history of rats...maybe this is a good compromise pet. She has been longing for her own pet for years (Charlie doesn't count), and the worm farm doesn't seem to be filling that role.
Thursday, February 11, 2010
Waiting, healing, hoping...
Again, a week has sped by and I have been waiting to write until we hear something about the clinical trial we found out about on Monday, but we are still waiting. Manford is gradually gaining strength each day; yesterday he walked to the bus stop with the OT, and he is more steady and confident around the house. His main problem at this point is low blood pressure--orthostatic hypotension; when he stands up, his blood pressure drops, and he gets a bit shaky, so I am still nervous to leave him alone in case he should fall. Other than that, he is doing well; he says he has a bit more trouble concentrating than usual, but that is going around...
Monday we went to the oncology clinic again and talked to a second oncologist. The first oncologist had spoken to him about Manford after our session, and called me back and said that he had been convinced by this second doctor (who is more specialized in neurooncology) that more aggressive treatment was appropriate, and there was a clinical trial we might be interested in. So Monday afternoon this new doctor (Tills) spent an hour and a half talking with us, and was more optimistic about Manford's chances of responding to chemotherapy than the other. I wonder if this is an age thing...the first doctor, who looked to be in his 30's, considered Manford to have a poorer prognosis (and unlikely to benefit from chemotherapy) because he was over 60...this second doctor, who looks to be in his 50's, put the line up a bit, at 70.
They are starting a clinical trial (based in Canada, but also governed from Geneva) of Avastin, which is a promising new medication that inhibits blood vessel generation. If he participates, Manford would either get the standard treatment, which is 6 weeks of radiation and chemotherapy, or standard treatment plus Avastin, which goes along with the chemotherapy. It is a double blind, so we won't know which he is getting, but he would also get very careful follow-up...but since his tumor is a rare variant of the more typical glioblastoma, someone in Geneva has to decide whether he is even eligible to consider for the study, and we have been waiting to hear the verdict on this. If he isn't eligible, he will still get the standard treatment, and I suppose there will be less hassle with repeat visits (the Avastin requires IV administration every two weeks during radiation and every three weeks after, or something like that).
They started the process of preparation and planning for radiation on Monday, making a plastic mask (out of kind of web, so not as claustrophobia-stimulating as it might be) to immobilize his head, and doing a CT scan, so we were there 3 1/2 hours in all. The clinic is very comfortable--not fancy, but the people are very nice and supportive and there are volunteers everywhere offering cups of tea.
Then Tuesday we had a visit from the nurse from the cancer society, who was also very warm and helpful, and spent two hours with us describing all the kinds of supports they can offer, including transportation to treatment, a brain tumor support group that is starting this month, counseling, information, meals, emergency funding if we needed it (we are lucky and don't, but it is good they have this), visits from the nurse, and maybe a volunteer "bloke" who will come and visit Manford so I can go to the grocery store...
The kids are settled in school; last night was "meet the teacher" night for parents at Emily's school, and I was again impressed by the headmaster, and really liked her teacher. This is good--last year she had a young man who was just too new, and seemed scared to death all the time. She liked him, but I'm glad she has someone with more experience now--Emily seems very happy and seems to be making new friends and not complaining of teasing from boys, which was the big problem last year. And Joseph seems happy to be back at school, in spite of himself, and is delving in to a very techy curriculum (Math, Programming, Chemistry, Physics, English, and PE). In English he is doing some project on how language is used to represent some topic, and has cleverly chosen the topic of video games, so he can say he's doing his homework as he is surrounded by his video game magazines...
So, we wait, and heal, and hope--
Carrie
Monday we went to the oncology clinic again and talked to a second oncologist. The first oncologist had spoken to him about Manford after our session, and called me back and said that he had been convinced by this second doctor (who is more specialized in neurooncology) that more aggressive treatment was appropriate, and there was a clinical trial we might be interested in. So Monday afternoon this new doctor (Tills) spent an hour and a half talking with us, and was more optimistic about Manford's chances of responding to chemotherapy than the other. I wonder if this is an age thing...the first doctor, who looked to be in his 30's, considered Manford to have a poorer prognosis (and unlikely to benefit from chemotherapy) because he was over 60...this second doctor, who looks to be in his 50's, put the line up a bit, at 70.
They are starting a clinical trial (based in Canada, but also governed from Geneva) of Avastin, which is a promising new medication that inhibits blood vessel generation. If he participates, Manford would either get the standard treatment, which is 6 weeks of radiation and chemotherapy, or standard treatment plus Avastin, which goes along with the chemotherapy. It is a double blind, so we won't know which he is getting, but he would also get very careful follow-up...but since his tumor is a rare variant of the more typical glioblastoma, someone in Geneva has to decide whether he is even eligible to consider for the study, and we have been waiting to hear the verdict on this. If he isn't eligible, he will still get the standard treatment, and I suppose there will be less hassle with repeat visits (the Avastin requires IV administration every two weeks during radiation and every three weeks after, or something like that).
They started the process of preparation and planning for radiation on Monday, making a plastic mask (out of kind of web, so not as claustrophobia-stimulating as it might be) to immobilize his head, and doing a CT scan, so we were there 3 1/2 hours in all. The clinic is very comfortable--not fancy, but the people are very nice and supportive and there are volunteers everywhere offering cups of tea.
Then Tuesday we had a visit from the nurse from the cancer society, who was also very warm and helpful, and spent two hours with us describing all the kinds of supports they can offer, including transportation to treatment, a brain tumor support group that is starting this month, counseling, information, meals, emergency funding if we needed it (we are lucky and don't, but it is good they have this), visits from the nurse, and maybe a volunteer "bloke" who will come and visit Manford so I can go to the grocery store...
The kids are settled in school; last night was "meet the teacher" night for parents at Emily's school, and I was again impressed by the headmaster, and really liked her teacher. This is good--last year she had a young man who was just too new, and seemed scared to death all the time. She liked him, but I'm glad she has someone with more experience now--Emily seems very happy and seems to be making new friends and not complaining of teasing from boys, which was the big problem last year. And Joseph seems happy to be back at school, in spite of himself, and is delving in to a very techy curriculum (Math, Programming, Chemistry, Physics, English, and PE). In English he is doing some project on how language is used to represent some topic, and has cleverly chosen the topic of video games, so he can say he's doing his homework as he is surrounded by his video game magazines...
So, we wait, and heal, and hope--
Carrie
Thursday, February 4, 2010
Home!
I'm sorry to have been so silent--I thought I would write when Manford got home, which was yesterday, but then it was one of those days that the Kiwis call "full on," which means one thing after the other and no time for anything.
Manford is home, and walking around quite steadily. I went and picked him up at midday yesterday, while a friend stayed with Emily (Joseph started school yesterday, Emily today). We got home about 1:00, and then were absorbed with various visits from PT, OT, and nurse in the afternoon. They are good about getting all sorts of supports in place. The nurse from the cancer society also called and she will come to the house next week, which I thought was going to be before the oncology appointment, but then the ward called us as we were walking in the door and said we had an appointment with oncology tomorrow (today) morning. This was a bit of a shock and I was feeling unprepared, but it turned out all right, as I'll write...
Anyway, last night about 5:30 my dad and stepmother arrived back from Wellington area, and we had our favorite Japanese take-out and welcome-home cake, decorated by Emily. Manford was pretty tired and we all collapsed by 8:30 (ok, Joseph was still awake and alert, and Dad and Diane went back to their hotel).
This morning we got Emily off to school (she got the teacher she wanted) and then the nurse and doctors (three of them--I presume the ones tagging along and watching were residents or students) came--the nurse will come every day (for two weeks or so), but I don't think the doctors will be back as often. Then we raced off to the oncology appointment.
The doctor was compassionate and thoughtful, and not hurried except by the fire alarm that came just as we were finishing the appointment...I can't say he was very optimistic, but he seemed flexible and respectful. He said that chemotherapy has not been shown to be effective for this tumor in people over 60--it may delay the progression somewhat, but is not well tolerated and may or may not be worth it. We will definitely do radiation, which is just three weeks of daily treatments. We may participate in a clinical trial of chemotherapy; we will talk about that on Monday. I have been reading and calling some people about clinical trials in the US, but I'm not sure what we will decide to do.
Manford seems to be taking it all very well, though he is easily tired, as you might expect. He has recovered remarkably well from the surgery. We appreciate the cards people have sent(a pile came yesterday, right on time for the homecoming), and all the thoughts and prayers.
Carrie
Manford is home, and walking around quite steadily. I went and picked him up at midday yesterday, while a friend stayed with Emily (Joseph started school yesterday, Emily today). We got home about 1:00, and then were absorbed with various visits from PT, OT, and nurse in the afternoon. They are good about getting all sorts of supports in place. The nurse from the cancer society also called and she will come to the house next week, which I thought was going to be before the oncology appointment, but then the ward called us as we were walking in the door and said we had an appointment with oncology tomorrow (today) morning. This was a bit of a shock and I was feeling unprepared, but it turned out all right, as I'll write...
Anyway, last night about 5:30 my dad and stepmother arrived back from Wellington area, and we had our favorite Japanese take-out and welcome-home cake, decorated by Emily. Manford was pretty tired and we all collapsed by 8:30 (ok, Joseph was still awake and alert, and Dad and Diane went back to their hotel).
This morning we got Emily off to school (she got the teacher she wanted) and then the nurse and doctors (three of them--I presume the ones tagging along and watching were residents or students) came--the nurse will come every day (for two weeks or so), but I don't think the doctors will be back as often. Then we raced off to the oncology appointment.
The doctor was compassionate and thoughtful, and not hurried except by the fire alarm that came just as we were finishing the appointment...I can't say he was very optimistic, but he seemed flexible and respectful. He said that chemotherapy has not been shown to be effective for this tumor in people over 60--it may delay the progression somewhat, but is not well tolerated and may or may not be worth it. We will definitely do radiation, which is just three weeks of daily treatments. We may participate in a clinical trial of chemotherapy; we will talk about that on Monday. I have been reading and calling some people about clinical trials in the US, but I'm not sure what we will decide to do.
Manford seems to be taking it all very well, though he is easily tired, as you might expect. He has recovered remarkably well from the surgery. We appreciate the cards people have sent(a pile came yesterday, right on time for the homecoming), and all the thoughts and prayers.
Carrie
Saturday, January 30, 2010
home visit
Manford came home for about five hours today--we had lunch (the sausages he has been craving), and watched basketball, read and rested in a very quiet house, except for Charlie, who was quite overjoyed to see him. The kids are having a good time in Napier, and due back tomorrow. I will spend my second night alone in the house, realizing it has been years--possibly 16--since this has happened. I guess I'm not alone, really; Charlie sleeps under the bed. Manford got around the house very well, and is eager to stay home in a few days. For now, we look forward to another visit tomorrow.
Friday, January 29, 2010
Progress
Manford is doing very well, and they've decided that he doesn't need rehab, after all; he's now able to walk with just a cane, and they plan to discharge him home next week, probably Tuesday or Wednesday (Monday is a holiday), with the home hospital for support. They are the ones that came before he was hospitalized, and have a nurse that comes every day, and PT and OT. He is able to come home for a visit tomorrow (and hopefully also Sunday and Monday, if it goes well), and is looking forward to some sausages and his own chair. My father and his wife arrived on Wednesday, and how have taken Emily and Joseph out of town for a couple of days, to Napier, on the East side of the North Island.
We don't have an appointment with oncology until February 11, but we will be looking into what the options are before then, both on our own and with the help of the Cancer Society. My work and colleagues have been very understanding and supportive, and I basically have all the leave I need. In the midst of this, we did manage to hire someone to help at home, and she has been wreaking some order in our havoc, and I am very grateful. And grateful, too, for all your thoughts and prayers.
Carrie
We don't have an appointment with oncology until February 11, but we will be looking into what the options are before then, both on our own and with the help of the Cancer Society. My work and colleagues have been very understanding and supportive, and I basically have all the leave I need. In the midst of this, we did manage to hire someone to help at home, and she has been wreaking some order in our havoc, and I am very grateful. And grateful, too, for all your thoughts and prayers.
Carrie
Wednesday, January 27, 2010
Keep praying
We got the report from the biopsy, and Manford has gliosarcoma, which is a rare form of glioblastoma, grade IV. We will be talking to the oncology people in the next day or two, and starting radiation and chemotherapy sometime in the next two weeks. He is still waiting for a bed on the rehab unit, but is up and walking more. We met the rehab doctor, who is American, but she talks fast, so he still can't understand her...
Sunday, January 24, 2010
Room with a view
Today they moved Manford to a new bed--same room, but a prime location by the window. He has had several visitors and was a bit tired, but still doing well. They took off the bandage to give his staples a nice airing...now Emily is scared to see him, but we'll work on that.
Saturday, January 23, 2010
Saturday
It's Saturday here, and somewhat quieter at the hospital, at least in the corridors. Manford continues to do better--he is now on low risk of falls, and can get into and out of bed without help. I haven't gotten to talk directly to the doctors in several days--they manage to keep families away during rounds--and it is hard to tell who the doctors are, sometimes--everyone goes by first names, here, but I think the person I talked with today was probably the charge nurse, not the doctor. He said that the plan is for Manford to go to the rehab ward for a week or two after he leaves the neurosurgical ward, and that might be mid-to-late next week. We should find out the pathology results Tuesday or Wednesday, unless they are unsure and then they will send it to Auckland for a second opinion, and it might be a few more days.
The kids are doing ok; Joseph is avoiding mowing the lawn very adeptly, and neither is exactly rejoicing at the anticipation of school starting week after next. The summers aren't quite long enough here to get thoroughly bored, with Christmas and New Years taking up a good chunk at the beginning. Next week, my father and his wife arrive, and we are looking forward to that visit, though not exactly sure the shape it will take. But Manford really didn't want to go caving, anyway...
The kids are doing ok; Joseph is avoiding mowing the lawn very adeptly, and neither is exactly rejoicing at the anticipation of school starting week after next. The summers aren't quite long enough here to get thoroughly bored, with Christmas and New Years taking up a good chunk at the beginning. Next week, my father and his wife arrive, and we are looking forward to that visit, though not exactly sure the shape it will take. But Manford really didn't want to go caving, anyway...
Friday, January 22, 2010
Surgery + 2 days
Manford is doing better today, walking much more easily (they still put this kind of handle belt on him when he walks, but then just walk along beside) and talking and understanding much more clearly. This picture is from just the day after surgery, and he is looking better every day; I'll take another soon. I took a picture of one of the MRI pictures...I couldn't look at these before the surgery (they showed them to us the day before, but I put them away) because they were just too scary. This is the worst looking one, really; it looks like the tumor is taking over his whole frontal lobe. A lot of that is edema, though, and it seems to be responding to steroids and the surgery. keep up the good thoughts.
more better
When I visited Manford last night, he was continuing to seem better and more like himself. He keeps getting the hiccups, which he insists on calling "diaphramatic spasms," which tickles the nurses. They took out the drain on his head, which is good because it kind of freaked out poor Emily; I will take the kids to see him again this afternoon.
Thursday, January 21, 2010
update
Manford is much better today than I expected, having heard that they would be wakening him every half hour all night last night...he was sitting up the whole time I was there, and talking more clearly and moving more easily. He still has considerable swelling and that is probably contributing to still being a bit confused at times, but they say that is to be expected. He appreciates all the messages and thoughts coming from all around the world.
Morning
Last night Emily and I went and saw Manford briefly as he was brought back up to Ward 8 (Joseph was at a friend's on the other side of town). He will be on a close observation ward for a day or two, where there is a nurse there in a big room with five beds (though only three of them were full last night). We brought him flowers from our friend's garden (remember, it's summer) but he can't have flowers in that room, but will probably move in a day or two to a single room. I hope to talk to the doctor today, but we won't know anything about the next step until next week, when the pathology report comes back. I know he appreciates all of your thoughts and prayers. It's too bad they can't do video visiting, but they don't even have TV, so that is a bit much to ask...
Wednesday, January 20, 2010
success!
We just got the call fromthe surgeon, and Manford is out of surgery and doing ok, can talk and move and he said it went well. It got started late, and took five hours, so we are a bit exhausted, but hopeful. More later...
Carrie
Carrie
Today
Today is Wednesday, our time, and at about noon, they are going to do the surgery. Manford had an MRI yesterday, and we saw pictures afterward of this quite daunting tumor taking over his right frontal lobe--it's about large egg-sized, and there is quite a bit of edema around it. The doctor, who is supposed to be very good, said that it won't be clear until after the surgery whether the symptoms he's having are because of the swelling, in which case they should resolve after surgery, or because of damage to the tissue. They will take as much of it out as they can, but can't be too aggressive because it is the kind of tumor that grows from the brain tissue, and it's hard to separate from healthy tissue. So after they figure out what kind of tumor it is, he'll probably have to have radiation and/or chemotherapy. But for now, we are concentrating on getting through the surgery, which should last 2-3 hours. At least it isn't the kind where he has to be awake. The surgery, then, will be at about 5-8 pm Kansas/Texas time (Tuesday), 3-6 Pacific time, and god knows what time it is in Arizona. I will be waiting with friends who live near the hospital; Joseph will be at his friend's house, and Emily will be at day camp and then with me and the friends near the hospital. He will probably go the the high dependency unit (sounds like a step below ICU) for a day or two, then back to the neurosurgery ward for a total of about 5-7 days, if things go well.
Tuesday, January 19, 2010
good news and bad news, but with hope
The good news is, it isn't Lewy Body disease (which is progressive and untreatable) or the Parkinson's getting worse (he was doing really, really well), but it is a brain tumor. They did a CT scan yesterday and found it, quite big (4 x 6 cm) in or near the frontal lobe (I think right side, as he's been weak on the left). They have put him on steroids and are doing an MRI today to get a better idea of what's there, and then plan to do surgery in the next few days. So far I have only talked to the neurosurgeon briefly, but I hope to have a better idea of the plan later today. They are stricter about visiting hours on the neurosurgery ward (Ward 8), so I can't go to see him until 11 this morning, but last night the kids and I visited as they were transfering him up there and he seemed to be feeling ok and settling in there. It is scary because his mother died in surgery for a brain tumor, but they are much better at that sort of thing now. Please keep holding us in the light.
Carrie
Carrie
Saturday, January 16, 2010
Acopia
This is Carrie, and I'm sorry it's been so long since I have blogged, or posted any pictures--I see it's been nearly a year, as Emily is about to start her second year at Southwell. Unfortunately, that isn't what I need to write about.
Manford has been struggling the last two months or so with more and more symptoms of Parkinson's, or something--we've been to numerous doctors. At the beginning of December, we went back to his neurologist, and he put him on Requip, which is a dopamine agonist, gradually increasing the dose over the last month. During that time, he went from being very tired all the time and having some difficulty with short term memory to having much more difficulty walking, hallucinations (which are supposed to be common with that medication), speech that is increasingly hard to understand, and finally, a couple of days ago, really unable to walk safely in the house, and falling in the bathroom. He was getting up several times a night, but couldn't get back in bed himself because his legs weren't working, and he kept thinking someone was outside the house. We were to go to the neurologist that day, and had to borrow a wheelchair because he couldn't walk to the office, and after I practically begged and cried in the office, he conceded to call the rehab unit and see if he could be admitted to get some help with things. No one seemed to be listening to me that this is an acute deterioration; they all just attribute it to the Parkinson's or the meds stopping working. The neurologist started to conclude that he had Lewy Body Disease, but I am not prepared to believe that yet; he put him on Seroquel, which I gave him as soon as I got it, but this may have been a mistake, because it probably sedated him and made his speech very slurred and make him really foggy.
However, at least this started a process, because that afternoon (as we were attempting to interview three candidates for a housekeeper, to try to help retain my sanity), we were descended on by a team from the "home hospital"--two PT's, an OT, a nurse and a doctor. Apparently they didn't have a bed until Monday (this was Thursday) at the rehab unit, so they were to support us at home until then. They evaluated Manford, and started to get equipment like a walker and shower stool, and called to get grab bars put in, and were very nice and helpful. However, by the end of the afternoon, the doctor concluded that he couldn't be safe at home because even she and I together couldn't help him to the bathroom, and she arranged an admission to a medical unit and sent for an ambulance to transport him.
Meanwhile, the two young women who showed up for the interviews were thrown in with Emily and Joseph (it is summer here, so they are both home), and both were adaptable and seemed good. Emily really liked one named Laura, so we hired her. She is a journalism student but won't start school for several weeks, so she's starting Monday.
The ambulance people were very nice, and in filling out their paperwork explained to me that they were writing that he was being admitted for "acopia", which is the technical term for not coping...at that point I was exhausted and feeling quite a bit acopic myself.
In spite of the admission being all arranged, we did spend six hours in the emergency room, and he got settled into his room about 1 am, fell asleep, and I went home (luckily, my good friend Kyle and her baby came and entertained Emily and Joseph).
I missed the doctors' rounds Friday morning, and rushed in this morning (Saturday) to try to catch them, but it turns out that there are no doctors on weekends, at least not routinely. That is not very heartening, but generally the people have been very good, and they have taken him off the Requip (but kept him on the Seroquel, which I will talk with them about on Monday), and he is much more clear, able to talk and joke and try to pull himself up a bit. On Thursday he couldn't even push himself up in bed. They are supposed to do an MRI, but it doesn't seem to be happening before next week.
He says he wants Dub George and Gary McNight to visit him, but I think he's kidding...maybe you could have an out of body experience and visit him in some other realm. I think it is very hard for him to have no one know him in his former roles; he has felt very undervalued by the fact that the New Zealand audiology board won't recognize his credentials, in spite of the fact that he really doesn't want to practice here.
So, please hold us in the light, or think of us, or pray, or cross your fingers or toes, or whatever you can do. He's in Waikato Hospital, Ward 5 at the moment, but I don't know for how long. I am doing better with a whole night of sleep, and the kids are doing ok, but miss their dad. Emily has been making things for him, and Joseph is attached to his computer by some kind of electronic umbilical cord, but is also being helpful when asked. Joseph got his exam results (from the big end of year exams) in the mail yesterday, but won't open the envelope.
but at least it isn't snowing, and the hospital isn't going to cost us a quadzillion dollars, and it's January, which means that half of New Zealand is on vacation and no one has even noticed that I didn't go to work the last two days. By the way, I'm now officially Director of Clinical Training. My research is going well and when Manford goes to the rehab unit, it is in the same building as the prenatal unit where I am collecting data, so I guess I can give the students a break and do some of the visits myself.
I'm going to go and try to figure out how to get Manford a radio and speaker for his MP3 player--he is lucky in that he has a private room, but it's really in the style of an old county hospital, and not wonderful ambiance (we did bring flowers from home in a vase Emily made this morning), and no TV or radio in the room. He was amusing himself yesterday by throwing his kleenex out the window. I suspect this would be discouraged by the powers that be, so we should get him some other entertainment.
Carrie
Manford has been struggling the last two months or so with more and more symptoms of Parkinson's, or something--we've been to numerous doctors. At the beginning of December, we went back to his neurologist, and he put him on Requip, which is a dopamine agonist, gradually increasing the dose over the last month. During that time, he went from being very tired all the time and having some difficulty with short term memory to having much more difficulty walking, hallucinations (which are supposed to be common with that medication), speech that is increasingly hard to understand, and finally, a couple of days ago, really unable to walk safely in the house, and falling in the bathroom. He was getting up several times a night, but couldn't get back in bed himself because his legs weren't working, and he kept thinking someone was outside the house. We were to go to the neurologist that day, and had to borrow a wheelchair because he couldn't walk to the office, and after I practically begged and cried in the office, he conceded to call the rehab unit and see if he could be admitted to get some help with things. No one seemed to be listening to me that this is an acute deterioration; they all just attribute it to the Parkinson's or the meds stopping working. The neurologist started to conclude that he had Lewy Body Disease, but I am not prepared to believe that yet; he put him on Seroquel, which I gave him as soon as I got it, but this may have been a mistake, because it probably sedated him and made his speech very slurred and make him really foggy.
However, at least this started a process, because that afternoon (as we were attempting to interview three candidates for a housekeeper, to try to help retain my sanity), we were descended on by a team from the "home hospital"--two PT's, an OT, a nurse and a doctor. Apparently they didn't have a bed until Monday (this was Thursday) at the rehab unit, so they were to support us at home until then. They evaluated Manford, and started to get equipment like a walker and shower stool, and called to get grab bars put in, and were very nice and helpful. However, by the end of the afternoon, the doctor concluded that he couldn't be safe at home because even she and I together couldn't help him to the bathroom, and she arranged an admission to a medical unit and sent for an ambulance to transport him.
Meanwhile, the two young women who showed up for the interviews were thrown in with Emily and Joseph (it is summer here, so they are both home), and both were adaptable and seemed good. Emily really liked one named Laura, so we hired her. She is a journalism student but won't start school for several weeks, so she's starting Monday.
The ambulance people were very nice, and in filling out their paperwork explained to me that they were writing that he was being admitted for "acopia", which is the technical term for not coping...at that point I was exhausted and feeling quite a bit acopic myself.
In spite of the admission being all arranged, we did spend six hours in the emergency room, and he got settled into his room about 1 am, fell asleep, and I went home (luckily, my good friend Kyle and her baby came and entertained Emily and Joseph).
I missed the doctors' rounds Friday morning, and rushed in this morning (Saturday) to try to catch them, but it turns out that there are no doctors on weekends, at least not routinely. That is not very heartening, but generally the people have been very good, and they have taken him off the Requip (but kept him on the Seroquel, which I will talk with them about on Monday), and he is much more clear, able to talk and joke and try to pull himself up a bit. On Thursday he couldn't even push himself up in bed. They are supposed to do an MRI, but it doesn't seem to be happening before next week.
He says he wants Dub George and Gary McNight to visit him, but I think he's kidding...maybe you could have an out of body experience and visit him in some other realm. I think it is very hard for him to have no one know him in his former roles; he has felt very undervalued by the fact that the New Zealand audiology board won't recognize his credentials, in spite of the fact that he really doesn't want to practice here.
So, please hold us in the light, or think of us, or pray, or cross your fingers or toes, or whatever you can do. He's in Waikato Hospital, Ward 5 at the moment, but I don't know for how long. I am doing better with a whole night of sleep, and the kids are doing ok, but miss their dad. Emily has been making things for him, and Joseph is attached to his computer by some kind of electronic umbilical cord, but is also being helpful when asked. Joseph got his exam results (from the big end of year exams) in the mail yesterday, but won't open the envelope.
but at least it isn't snowing, and the hospital isn't going to cost us a quadzillion dollars, and it's January, which means that half of New Zealand is on vacation and no one has even noticed that I didn't go to work the last two days. By the way, I'm now officially Director of Clinical Training. My research is going well and when Manford goes to the rehab unit, it is in the same building as the prenatal unit where I am collecting data, so I guess I can give the students a break and do some of the visits myself.
I'm going to go and try to figure out how to get Manford a radio and speaker for his MP3 player--he is lucky in that he has a private room, but it's really in the style of an old county hospital, and not wonderful ambiance (we did bring flowers from home in a vase Emily made this morning), and no TV or radio in the room. He was amusing himself yesterday by throwing his kleenex out the window. I suspect this would be discouraged by the powers that be, so we should get him some other entertainment.
Carrie
Subscribe to:
Posts (Atom)
