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

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

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

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...

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

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.

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