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

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

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