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.

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

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...

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

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...

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.

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...

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

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.

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

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