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...
Saturday, December 25, 2010
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.
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