Groundhog Day again. Only difference is that I'm on my own again this week, which means I get to read a book while Toby is having his treatment. The second book since I've been out here and the second in as many years.
We head back to the flat, and although there is the intention to get out on the bike for some fresh air, Toby seems happy to remain at the flat and sit for a while (with the Chuggington website on naturally!). We eventually head out, to take some bottles back that are on "Pfand" (deposit). You may remember we did this in England years ago...I can certainly remember as a young child, returning empty lemonade bottles and getting 10p back which I was then allowed to spend on sweet.
Toby was a winner as although he didn't get the Pfand, he did get a lolly from the lady behind the counter. She asked what was the matter with his eye and the red face and bless her, got more than she bargained for when I then had to explain it wasn't sunburn as she had thought!
Tuesday, 8 September 2009
Weekend of 5th/6th September
Not a full weekend really as the treatment is carried out on Saturday this week, in an attempt to catch up from the scheduled maintenance day last Monday. We were given a pass yesterday to ensure we could get into the site, as it would be closed compared to a normal weekday. It felt quite strange being there without all the normal people milling around.
The rest of the day was pretty average. There was a local run being held in Bad Zurzach so we went to watch that. Various different age categories and some sort of relay race. All good fun and community minded.
On Sunday we took a late walk along the promenade by the Zurichsee (the lake) in Zurich. Didn't have quite enough time for a boat trip before needing to drop Sam and Kyle back at the airport, but both boys seemed quite happy to look at the boats, and take it easy. Zurich is quite unusual really. The perception is that of a capital city (although Bern holds that title, and holds the governmental buildings) but the size of it, the amount of traffic and number of people is much more provincial than in other european cities. Mind you, I think I read somewhere the population of Switzerland is only 7 million.
The rest of the day was pretty average. There was a local run being held in Bad Zurzach so we went to watch that. Various different age categories and some sort of relay race. All good fun and community minded.
On Sunday we took a late walk along the promenade by the Zurichsee (the lake) in Zurich. Didn't have quite enough time for a boat trip before needing to drop Sam and Kyle back at the airport, but both boys seemed quite happy to look at the boats, and take it easy. Zurich is quite unusual really. The perception is that of a capital city (although Bern holds that title, and holds the governmental buildings) but the size of it, the amount of traffic and number of people is much more provincial than in other european cities. Mind you, I think I read somewhere the population of Switzerland is only 7 million.
Sunday, 6 September 2009
Friday 4th September
Starting to feel like Groundhog Day. The alarm clock goes (too early!) and the day begins exactly as the last!
After the treatment, we take a trip to Waldshut for some fresh air and a spot of lunch before taking Dad and Rona back to the airport. The boys have been like caged animals the last few days (could it be the weather? They have been a handful, and then I realise Sam has a slightly raised temperature!).
By the time we get back, it's their tea, bath and bedtime, and then a couple of hours before waking them up to go and collect Kyle. I feel bad waking them up - they were both sound asleep. Especially as tomorrow, although Saturday, is another early start, as the treatment that was missed on Monday is scheduled for tomorrow.
After the treatment, we take a trip to Waldshut for some fresh air and a spot of lunch before taking Dad and Rona back to the airport. The boys have been like caged animals the last few days (could it be the weather? They have been a handful, and then I realise Sam has a slightly raised temperature!).
By the time we get back, it's their tea, bath and bedtime, and then a couple of hours before waking them up to go and collect Kyle. I feel bad waking them up - they were both sound asleep. Especially as tomorrow, although Saturday, is another early start, as the treatment that was missed on Monday is scheduled for tomorrow.
Thursday 3rd September
Although having the first appointment of the day is great, getting all 3 of us out of the flat for 7.20 am is challenging!
We see Carmen Ares today, the consultant. She's back from her holiday in Iceland, and popped in to see how Toby was doing. We mentioned his nosebleed, but she didn't seem concerned. So far, it's only happened when Toby has been playing roughly with Sam. She also mentioned that from next week, they will reduce down the volume of the area targeted, but keep the dose level the same. Kyle and I can't agree on whether that means the intensity increases in effect ie. a higher energy in smaller volume to give the same total dose in Grays, or not. We'll check next week when we see her again. We also ask about the possibility of seeing the machine and she was happy to agree, although exactly when remains to be organised. She understood totally how it's good to see where your 'baby' goes for his treatment. Carmen is spanish and speaks brilliant english, but very fast - so fast I struggle to keep up!
The weather today is grey and changeable but we need to get the boys some exercise so we head out for a walk up the side of the valley in Bad Zurzach where we are staying. We have a great view of the valley side from the flat and see one field of cows which Sam comments on regularly, so decide to go there for a closer look. Toby is more interested in splashing in every puddle possible (I have his wellies out here but he had his shoes on typically!) and drenched himself from toe to waist, but thoroughly enjoyed himself. Sam did really well at staying out of the puddles until the last 200 yards when the desire got the better of him and he soaked himself too. It also rained while we were out. Back to the flat for some lunch and then out again as the weather improved, with another walk, including the highlights of the train station, for Toby, and the Rhein. Despite all this walking, I decide that going for a run is a good idea once the boys are in bed that night, to make the most of Dad and Rona being there to babysit!
Friday, 4 September 2009
Wednesday 2nd September
Back on the treatment today which all went fine. Martina, the anaesthetist mentioned about the possibility of actually seeing the machine where Toby has the treatment, and suggests we speak to the doctor about it. They used to do it for all parents but since they they are increasingly busy and finding it harder to fit in for everyone. We see the doctor, Adrian Staab, another of the authors of 'that' research journal. However he's full of cold, so he stays at a distance and we decide to leave it until tomorrow before asking about it!
Dad noted the PSI centre seems very similar to the ILL in Grenoble, somewhere he visited while still working (Physics dept at Warwick University). The main difference seems to be that the ILL Grenoble deal in neutrons and PSI deal in protons!
Sam is most definitely more interested in watching the videos on offer when Toby wakes up. The novelty of seeing him asleep has worn off and 'Kipper' is more interesting. Last week it was 'Mausi' (or for those of you with young children that's actually 'Maisy' !) Having said all of this, Sam started reeling off his numbers in german today, unprompted! They say to start young with language don't they? Not sure sitting him in front of a german video all the time would count! Interestingly, the fact the programmes are all in german seems to have passed him by!
The weather has changed and it feels more like autumn today. I had an hour to myself while Dad and Rona entertained both the boys (musical statues I believe!) I dived under the duvet and had an hour of shut eye. Pure bliss.
Dad noted the PSI centre seems very similar to the ILL in Grenoble, somewhere he visited while still working (Physics dept at Warwick University). The main difference seems to be that the ILL Grenoble deal in neutrons and PSI deal in protons!
Sam is most definitely more interested in watching the videos on offer when Toby wakes up. The novelty of seeing him asleep has worn off and 'Kipper' is more interesting. Last week it was 'Mausi' (or for those of you with young children that's actually 'Maisy' !) Having said all of this, Sam started reeling off his numbers in german today, unprompted! They say to start young with language don't they? Not sure sitting him in front of a german video all the time would count! Interestingly, the fact the programmes are all in german seems to have passed him by!
The weather has changed and it feels more like autumn today. I had an hour to myself while Dad and Rona entertained both the boys (musical statues I believe!) I dived under the duvet and had an hour of shut eye. Pure bliss.
Wednesday, 2 September 2009
Tuesday 1st September
No treatment but Tuesday is chemo day so off to the Kinderspital. We arrived an hour before our appointment, so they could take blood and get results in time for the main appointment.
We have to go to the laboratory area in the basement of the hospital to drop blood off for testing normally, but with no treatment today (they take the blood sample) we needed to get the hospital to take the blood. Only problem seemed to be that the staff couldn't agree on who would take Toby's blood as 12.30 was their lunch break. ('Computer says no' again!!) Four of them walked off down the corridor within a minute of our request, clearly for lunch. 20 minutes later and 20 minutes of a 2 and 4 year old running around, someone realised what had happened and apologised profusely before taking his blood. The finger prick route is great for not taking more blood than is absolutely necessary, but poor Toby has finally got used to his wigglies being used and then they go and use a different method. Not happy at all, but only for the minute or so it took. The promise of a plaster was no motivation for him, but the offer of a sweet turned the cry into a sob into silence.
This time the blood results looked much better. 2.4 Neutrophils, 12.4 Haemoglobin. Platelsts were fine in the 400's. So, he was OK for chemo. According to the protocol, they should reduce the amount of Vinorelbine for this cycle. They will also probably not give the 3rd dose, as protocol guidelines suggest but they'll review in the context of his blood count. In theory, given he had Vinblastine last time, we don't really know how that affected his bloods compared to the Vinorelbine.
The Vinorelibine was administered over a 5 minute period, during which time, both Toby and Sam were distracted with some little electronic toys.
Then we got the cyclophosphamide. Not in a bottle designed to last for 28 days like in England, but 7 days worth, pre-measured in syringes with caps on, wrapped in swaddling for transport! Just need to work out a routine for giving it to Toby daily, given he's nil by mouth in the mornings.
Then all done and with the weather still fantastic, we took a quick trip up the Seilbahn (2 min journey up the hill) for a fantastic view over Zurich, the Zurichsee, and to see as far as Mount Rigi.
We have to go to the laboratory area in the basement of the hospital to drop blood off for testing normally, but with no treatment today (they take the blood sample) we needed to get the hospital to take the blood. Only problem seemed to be that the staff couldn't agree on who would take Toby's blood as 12.30 was their lunch break. ('Computer says no' again!!) Four of them walked off down the corridor within a minute of our request, clearly for lunch. 20 minutes later and 20 minutes of a 2 and 4 year old running around, someone realised what had happened and apologised profusely before taking his blood. The finger prick route is great for not taking more blood than is absolutely necessary, but poor Toby has finally got used to his wigglies being used and then they go and use a different method. Not happy at all, but only for the minute or so it took. The promise of a plaster was no motivation for him, but the offer of a sweet turned the cry into a sob into silence.
This time the blood results looked much better. 2.4 Neutrophils, 12.4 Haemoglobin. Platelsts were fine in the 400's. So, he was OK for chemo. According to the protocol, they should reduce the amount of Vinorelbine for this cycle. They will also probably not give the 3rd dose, as protocol guidelines suggest but they'll review in the context of his blood count. In theory, given he had Vinblastine last time, we don't really know how that affected his bloods compared to the Vinorelbine.
The Vinorelibine was administered over a 5 minute period, during which time, both Toby and Sam were distracted with some little electronic toys.
Then we got the cyclophosphamide. Not in a bottle designed to last for 28 days like in England, but 7 days worth, pre-measured in syringes with caps on, wrapped in swaddling for transport! Just need to work out a routine for giving it to Toby daily, given he's nil by mouth in the mornings.
Then all done and with the weather still fantastic, we took a quick trip up the Seilbahn (2 min journey up the hill) for a fantastic view over Zurich, the Zurichsee, and to see as far as Mount Rigi.
Monday 31st August
No treatment today due to machine maintenance. After such a busy weekend, catching up on the mundane things like washing and food shopping were needed.
We'd hoped an extra day off the treatment may have helped the redness go down on Toby's skin, but I don't think an extra day is going to make much difference now. It's just permanently red. We are applying the cream regularly but it looks like the redness will now remain until after the treatment.
Kyle returned home this afternoon, with Sam staying in Switzerland this time. At 7pm the PSI called to say the machine was not working after it's maintenance day so tomorrow's treatment was cancelled.
Picked up Grandad and Rona at the airport. They've come to help out until Friday when Kyle is back.
We'd hoped an extra day off the treatment may have helped the redness go down on Toby's skin, but I don't think an extra day is going to make much difference now. It's just permanently red. We are applying the cream regularly but it looks like the redness will now remain until after the treatment.
Kyle returned home this afternoon, with Sam staying in Switzerland this time. At 7pm the PSI called to say the machine was not working after it's maintenance day so tomorrow's treatment was cancelled.
Picked up Grandad and Rona at the airport. They've come to help out until Friday when Kyle is back.
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