Can't quite believe this day has come. After so long working towards this, it was certainly a weird feeling, walking away for the last time. The only analogy that springs to mind, is that feeling after finishing your exams. Like a weight has lifted off your shoulders, and that you are free to do what you want with your time again.
When Toby was having his treatment there was a meeting with one of the team, asking about how they could make things better, and how we felt things had gone. We really didn't have a bad word to say. If we ever end up in the business of recommending these things, the PSI would certainly get our vote. We also had a closing meeting with the doctors who re-iterated what some of the long term effects might be and also how the short term effects should reduce over time. They seemed grateful for our present, and were happy to chat more freely about Toby's future.
Despite us having written a thankyou letter, we wanted to put something in the guest book. We now need to get a photo printed out to stick in, think of something to write and get Toby to 'help' all before we leave on Friday. Mmmm we'll see.
After leaving the PSI we went straight to the Kinderspital for the usual chemo appointment. Thank goodness Toby's bloods are better than last week (Neutrophils 1.4). The reduced dose of Vinorelbine may have helped. So, we continue with the oral cyclophosphamide, and they advise us to drop the Vinorelbine, in line with the protocol. That saves us an extra half hour, so we made a quick exit, head for a sandwich in the cafe and then hit the road south to the Alps. An hour or two later we are surrounded by the most spectacular scenery. We stay the night in a 60's throwback 'motel' which we hurriedly booked last night. It had felt like Interlaken and the whole Jungfrau region was full when we looked on the internet, but this place had availability. Easy to see why!! Spotlessly clean, fantastically friendly staff but wow - like stepping back in time! A great way to try to start to relax and focus on oursleves as a family.
Thursday 17 September 2009
Monday 14 September 2009
Monday 14th September
The penultimate day of Toby's treatment! Hooray.
Martina had left a note on Friday for the anaesthetist today, to make sure we get the opportunity to finally view the machine. Only one of us can do it, but while Kyle takes Sam outside, I made sure I took plenty of photos. (See below!) It felt a bit gruesome really, but having spent so many weeks in a degree of ignorance on the 'how' it all happens, I wanted to make sure we made the most of the opportunity. Plus, at least we'll have the photos to show Toby when he's older. I felt sick when I saw some of their photos of Toby, made during the planning sessions. But I knew now is was the time to be an emotional wreck. Half of me wishes I'd never seen the images as they'll always be with me, but the other half of me feels better for knowing everything of what has happened to him. As a teenager or young adult, I would have wanted to know everything, so I think I need to make sure he can understand as much as possible, should he want to.
After the anaesthetic is in, the team bring a trolly through into the room, with Toby's full body mould on. They transfer him in, and put a 'bite block' in his mouth, which serves as a positioning device. They then tape his eye right eye open (and tape the other one shut!). The trolley then moves into the CT scanning room. They take a CT scan and if he's within 10mm of the original mould position, they can then change the proton beams with the use of computer software, to achieve the original target, and can achieve accuray of 0.25mm. Amazing stuff. He then waits while the previous patient is brought out and as soon as the corridor is clear, he's on his way down to the treatment room. Maximum efficiency of use of the machine is an understatement. When in the machine, his trolley is attached to the machine, which then retains him in his mould, while the rest of the trolley is moved away. The floor drops and then the machine rotates around him until it's above him. He looks like he's suspended in thin air. I can't believe how futuristic or space age it all seems.
Then it's time for the protons, and we all have to leave the room. At this point, I'm happy to leave proceedings. Although it's only a few minutes for the treatment, I was more than happy to say I'd seen enough. When Toby comes round in the recovery room, there is also a CD of images of him, that they've taken at PSI. Martina said she'd organise it and organise it she did. What a star.
We took it easy for the rest of the day. We've organised a thankyou gift for the PSI, and just had to sort out a gift bag and tissue paper, along with a couple of photos of Toby and a thankyou note. All ready for our last day of protons tomorrow! How will we feel when the chemo comes to a finish???!!!
Martina had left a note on Friday for the anaesthetist today, to make sure we get the opportunity to finally view the machine. Only one of us can do it, but while Kyle takes Sam outside, I made sure I took plenty of photos. (See below!) It felt a bit gruesome really, but having spent so many weeks in a degree of ignorance on the 'how' it all happens, I wanted to make sure we made the most of the opportunity. Plus, at least we'll have the photos to show Toby when he's older. I felt sick when I saw some of their photos of Toby, made during the planning sessions. But I knew now is was the time to be an emotional wreck. Half of me wishes I'd never seen the images as they'll always be with me, but the other half of me feels better for knowing everything of what has happened to him. As a teenager or young adult, I would have wanted to know everything, so I think I need to make sure he can understand as much as possible, should he want to.
After the anaesthetic is in, the team bring a trolly through into the room, with Toby's full body mould on. They transfer him in, and put a 'bite block' in his mouth, which serves as a positioning device. They then tape his eye right eye open (and tape the other one shut!). The trolley then moves into the CT scanning room. They take a CT scan and if he's within 10mm of the original mould position, they can then change the proton beams with the use of computer software, to achieve the original target, and can achieve accuray of 0.25mm. Amazing stuff. He then waits while the previous patient is brought out and as soon as the corridor is clear, he's on his way down to the treatment room. Maximum efficiency of use of the machine is an understatement. When in the machine, his trolley is attached to the machine, which then retains him in his mould, while the rest of the trolley is moved away. The floor drops and then the machine rotates around him until it's above him. He looks like he's suspended in thin air. I can't believe how futuristic or space age it all seems.
Then it's time for the protons, and we all have to leave the room. At this point, I'm happy to leave proceedings. Although it's only a few minutes for the treatment, I was more than happy to say I'd seen enough. When Toby comes round in the recovery room, there is also a CD of images of him, that they've taken at PSI. Martina said she'd organise it and organise it she did. What a star.
Weekend of 12th/13th September
Toby's temperature manages to stay down overnight and although a tiny bit higher than his normal temp, it's stabilised. He of couse is fine in himself.
We visited Solothurn (the oldest baroque city in Europe) and Bern, both of which are beautiful. Lots of fountains for the boys to stick their heads under, a steam tram in Bern, which yielded squeals from both of them. In the centre of Bern there is a little bike and scooter track set up for children to have a go on a range of pedal free bikes. They were just the right age for it, and it didn't cost a penny - the owners were obviously just banking on a few sales of their bikes on display.
We visited Solothurn (the oldest baroque city in Europe) and Bern, both of which are beautiful. Lots of fountains for the boys to stick their heads under, a steam tram in Bern, which yielded squeals from both of them. In the centre of Bern there is a little bike and scooter track set up for children to have a go on a range of pedal free bikes. They were just the right age for it, and it didn't cost a penny - the owners were obviously just banking on a few sales of their bikes on display.
Friday 11 September 2009
Friday 11th September
Martina also tells us that she won't be in next week when it's Toby's last treatment sessions so she wants to say goodbye properly today. She has been the most lovely anaesthetist you could ask for. She admitted she is very fond of Toby and loves his approach to everything he is facing. She said that she could tell even though he really doesn't like 'the wire' (used initially for a slow feed of the anaesthetic, but Toby wasn't keen on the feeling of losing control so they now just push it in in a second or so through a syringe!) and the final few seconds of consciousness, he goes along with the routine in such a good natured way, and so bravely. She thought that was a good trait to have. Her conversation was sometimes the longest interaction I had with any other adult for the whole day! Fantastic at english, but happy to speak in german to help me practice we chatted about all sorts over the last month 6 weeks. I felt quite emotional saying goodbye, and she was keen that we let her know how Toby gets on and grows up. I think with the treatment centre only doing about 100 patients a year (and only a small percentage are children), and not being in a hospital setting, there is definitely a unique feel about the place, and the chance for closer relationships to be formed. She brought out a lovely polar bear for Toby as a present, and he's been horsing around with it all afternoon!
His temperature goes down a bit through the course of the day, and does drop below 37 again, but it's annoyingly just above 37 for most of the readings. His body must be fighting something, and with his blood count so low on Tuesday, it's probably not going to just go away quickly.
Back at the flat, I spend a bit of time ironing and clearing up to get organised, in case we need to go into hospital. Toby does some jigsaws and the predictable setting up of his train track. Then this afternoon, with his temperature still ok, we make a trip over the border again for some food shopping before Sam and Kyle arrive tonight. I feel like I'm smuggling illegal stuff into the country when I nip over there. There are limits on food items (one days worth!) and milk and beer and so on. The thing is, it's so much better value, (literally half the price on many things) and less than a mile further on than the shops in Switzerland. Petrol is better value in Switzerland though so naturally I fill up here!
We are in the shop less than half an hour, and in that time I am asked about Toby's burnt face on 2 different occasions. No inhibitions like at home. Luckily they don't seem too embarrassed when I then have to launch into full explanation of what's happened to him (no I haven't let him sunburn that particular part of his face!).
Thursday 10 September 2009
Thursday 10th September
I take the bike, knowing it's up the hill, but it's only hills round here right? We're not in the Alps are we? Well...it didn't take long but the thighs could feel the hill, especially with Toby on the back! Think we climbed over 400 feet in about a mile after leaving Bad Zurzach! The animal park was a sorry affair, with signs up everywhere saying they needed help, if anyone fancied volunteering and selling off various bits of the bird cages. The small cafe had more success, with a lovely view, but one couldn't help thinking it was a missed opportunity. Toby enjoyed it though and loved seeing the goats run around, and quite enjoyed playing on the see-saw and slide. Back down the hill at top speed (don't tell Kyle - he thinks I go to fast, but Toby is still shouting 'faster' from the back seat!) and then a tootle along to the next village, with Toby searching for trains. Ah, the innocence, ah the earache about when the next train is coming (only 2 an hour means a whole lot of waiting for him!).
Skyped the in-laws to see and speak to Sam (who's staying with them this week). Seems he has been out on his bike around a lake at some nature park, and hasn't had time to miss us at all. He's excited though at the prospect of coming out tomorrow to see us, and the idea of the treatment finishing. We've decided it is now safe to tell him we plan to have a few days holiday at the end, when he can get to do some fun things, and him not be dragged around the PSI and the hospital with too much regularity. We'll have to make one trip back for chemo, but the other days will belong to us properly at least.
Wednesday 9th September
Good day all round. Treatment done and dusted, and back to the flat for a play and lunch, and then Toby decided he would comply with the idea of a daytime nap! He must have been tired as delaying tactics are his speciality at bedtime these days (and to think he used to ask to go to bed at 6.30pm!). Given all these early starts and my inability to get to bed at a sensible time (all my own fault - the internet is just too interesting!) meant that I thought I'd seize the chance of a kip too! I felt soooo guilty crawling under the duvet at 12.30 with glorious sunshine outside, but boy did we both feel better for it come 2pm!
Went out on the bike to stretch the legs and get some fresh air. Went over the bridge into Germany (weird taking passports with you on a bike ride and crossing country borders daily! Has anyone seen that film with Tom Hanks when he gets trapped airside?!!) and followed some of the bike trails on the other side of the river, just for a different view. Stopped off along the way to watch some ducks, look at some sheep on a farm, and admire a woman's 3 week old newborn! Fell into conversation, at which point I had a weird feeling come over me that this was the sort of 'scenario' you have in school language text books that you ought to be prepared for, along with the grocers, hotel, and going to the doctor. Hans und Lieselotte if you learnt german in the 80's like me (dog was "Lumpi" but I digress!), or Jean-Paul and Claudette Marsaud in the french version.
Went out on the bike to stretch the legs and get some fresh air. Went over the bridge into Germany (weird taking passports with you on a bike ride and crossing country borders daily! Has anyone seen that film with Tom Hanks when he gets trapped airside?!!) and followed some of the bike trails on the other side of the river, just for a different view. Stopped off along the way to watch some ducks, look at some sheep on a farm, and admire a woman's 3 week old newborn! Fell into conversation, at which point I had a weird feeling come over me that this was the sort of 'scenario' you have in school language text books that you ought to be prepared for, along with the grocers, hotel, and going to the doctor. Hans und Lieselotte if you learnt german in the 80's like me (dog was "Lumpi" but I digress!), or Jean-Paul and Claudette Marsaud in the french version.
Tuesday 8 September 2009
Tuesday 8th September
Toby has now had a nose bleed every day for the last week and the doctor at PSI was keen I discuss this at the Kinderspital at the appointment later in the morning (11.30). I was also informed of an appointment at the Universitätspital, at the eye clinic at 1 pm. Great they were on the same day and close together. Luck or good planning?
Toby's bloods are already low, just a week into this chemo cycle. His Neutrophils were 1.03 and if 0.9 or less the chemo would be witheld. The doctor suggested the oral daily cyclophosphamide is continued, but the Vinorelbine was reduced to a 60% dose. They managed to completely distract him from the 'wire' and yet again he's offered a sweet from a tin that appears miraculously at the appropriate time. The platelets and haemoglobin were good though, so no real concern on the nosebleeds, especially as they are very quick and mild. He's not losing more than a few drops really each time. They also checked with ENT about the nosebleeds but really the recommendation is just to continue with the cream, but put up the nose now as well as on his eye area. Think that'll have to be when he's asleep. Keeping him still enough for eye drops is a challenge and one that we regularly fall out over!
On a positive note, he seems very comfortable at the Kinderspital now, knowing his way round, keen to ring the bell when we drop his blood samples off, happy with being examined, loving the playroom and happy to go out to play there while the doctor and I finish any conversations. Everyone comments on how active he is, and he's starting to get people admiring that beautiful blonde hair that's well on its way back, thank goodness.
The appointment at the eye clinic (Augen Klinik) was much better than the first time! Toby had a couple of photos taken, and a sweet appears as a well done again. (Just leaves me worrying about his teeth rotting...after all I haven't got enough to worry about!). They looked at the optic nerve, and the cornea as best they could, given his light sensitivity. Both appeared normal, which was a bit of a relief. Obviously it's the long term where things can also develop, but it's still good to know the cornea is smooth now in the throws of the treatment and not damaged due to him scratching it too much or the radiation itself. They wanted an appointment for the end of Sept or early Oct, but given we'll be back in England, they think it's something Q.C can follow up on. I think we have an appt in with the othoptic team then anyway actually!
Got home and opened up the new supply of chemo to give today's dose. The labelling isn't cyclophosphamide so I rang the hospital to tell them. Given their mistake the first week I didn't want to take any chances! They assure me that Endoxon is the name of the medicine and that cyclophosphamide is the active ingredient. Better to check and be on the safe side though. Mind you, might just go and Google it. I know, I'm a nightmare!
Monday 7th September
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!
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!
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.
Weekend of 29th/30th August
Decided we'd make the trip to Legoland in Germany. Although the boys would be too young for many of the rides, we'd been given a leaflet at the PSI which mentioned a sea life centre and a Bob der Baumeister 4D cinema feature thing!
The lego built cities fascinated the boys. I though they may have been a bit too passive for them, but they loved the detail, and could have spent the entire day in that section alone. Bob der Baumeister went down well, as did everything to be honest! Naturally, Kyle and the boys enjoyed the lego 'test centre' where you could build a tower out of lego and then press a button to see if it would survive the equivalent of an earthquake. Given Kyle is a civil engineer, you might be relieved to know he did actually manage to achieve this!
The lego built cities fascinated the boys. I though they may have been a bit too passive for them, but they loved the detail, and could have spent the entire day in that section alone. Bob der Baumeister went down well, as did everything to be honest! Naturally, Kyle and the boys enjoyed the lego 'test centre' where you could build a tower out of lego and then press a button to see if it would survive the equivalent of an earthquake. Given Kyle is a civil engineer, you might be relieved to know he did actually manage to achieve this!
Friday 28th August
Treatment as before. A longer chat with the anaesthetist, (who was German and originally from Munich) confirmed our theories on Switzerland and gave a small insight into the swiss way of life. He's been in Zurich 3 years and still doesn't even attempt to speak Swiss German. It really is very different to Hoch Deutsch.
The weather was a little cooler and cloudier today. Crazy golf in the local park with the boys was a nice way to spend the afternoon. Toby is yet to grasp the concept of using the club to get the ball in the hole. His attitude seemed to be, bit it once, pick it up and carry it to the hole and then knock in with the club from a distance of about 1 cm away!!!
The weather was a little cooler and cloudier today. Crazy golf in the local park with the boys was a nice way to spend the afternoon. Toby is yet to grasp the concept of using the club to get the ball in the hole. His attitude seemed to be, bit it once, pick it up and carry it to the hole and then knock in with the club from a distance of about 1 cm away!!!
Thursday 27th August
Another day with treatment going according to plan. Oce Toby comes round after his anaesthetic, the mood lifts considerably as thoughts can turn to a few hours of our own time.
The weather is still good out here (c. 28 degrees and sunny) so we spent the afternoon at the outdoor pool again. Toby was better this time and more content splashing in and around the water rather than being intent on full immersion!
The weather is still good out here (c. 28 degrees and sunny) so we spent the afternoon at the outdoor pool again. Toby was better this time and more content splashing in and around the water rather than being intent on full immersion!
Wednesday 26th August
Treatment all as usual. Skin seems to be redder still and I think it's fair to say now this is now due to the radiation rather than the plaster holding his eyes open. We asked to see some pictures of how the proton beams are being aimed at Toby. The best pictures (3D) are only on their computers but we did get to see a 2D image, in his notes. One beam direction is from straight on in front of his eye. The other is from the side, pointing towards the inner corner of his right eye, adjacent to the nose bone. Perhaps unsurprising as this was where the cancer started.
We could clearly see how it completely misses his brain. What was not so good, was the fact they needed to irradiate behind his eye. Something we weren't aware of until now, but will undoubtedly be due to how the cancer spread in the weeks between diagnosis and initial biopsy and the surgery and chemo starting which was 3 weeks later. Not long, but long enough for it to have grown from the size of a pea to the size of a golfball.
They are not concerned about the optic nerve and have been able to reduce the dose around the lacrimal gland, which is responsible for tear production. Sounds relatively unimportant in the scheme of things, but a dry eye can be so painful, that removal of the eye is often needed. Fingers crossed is all we can do on this one.
Seeing all of this reminded me about how long term his follow up will be. Whether it will involve an occasional visit out here again or just copies of his check ups at QMC I don't know, but the contact will continue for years, of that I'm sure.
In the afternoon, all 4 of us went for a bike ride. Sam now rides on a 'tag along' bike and is increasingly heavy for Kyle to pull along. Toby is in a seat on the back of my bike and heavy enough, but Sam now rides on a 'tag along' attachment to Kyle's bike. Let's just say an hour out on the bike left him 800 calories lighter!
We could clearly see how it completely misses his brain. What was not so good, was the fact they needed to irradiate behind his eye. Something we weren't aware of until now, but will undoubtedly be due to how the cancer spread in the weeks between diagnosis and initial biopsy and the surgery and chemo starting which was 3 weeks later. Not long, but long enough for it to have grown from the size of a pea to the size of a golfball.
They are not concerned about the optic nerve and have been able to reduce the dose around the lacrimal gland, which is responsible for tear production. Sounds relatively unimportant in the scheme of things, but a dry eye can be so painful, that removal of the eye is often needed. Fingers crossed is all we can do on this one.
Seeing all of this reminded me about how long term his follow up will be. Whether it will involve an occasional visit out here again or just copies of his check ups at QMC I don't know, but the contact will continue for years, of that I'm sure.
In the afternoon, all 4 of us went for a bike ride. Sam now rides on a 'tag along' bike and is increasingly heavy for Kyle to pull along. Toby is in a seat on the back of my bike and heavy enough, but Sam now rides on a 'tag along' attachment to Kyle's bike. Let's just say an hour out on the bike left him 800 calories lighter!
Tuesday 25th August
Treatment went ahead as usual. The weekly interview with the research team also went well, although with nothing new to report really. The catch up with the consultant was the same. The same questions seem to get asked every week, with me feeling as if I'm repeating the same answers. Not sure whether this is a good thing (i.e. things haven't got any worse!) or whether they are expecting more detail...
Chemo day today so straight to the Kinderpsital post proton therapy, to drop bloods in for testing. Within 20 minutes the results are available in the day care clinic, and we get the news that his blood count is STILL too low to start the next lot of chemo. That means a quick exit, but another nagging worry about whether this is too long to be without the chemo...
The boys are desperate to go on a tram (having been so deprived to never have been on the Nottingham tram even!) so we walk down the hill from the hospital and catch the tram into the downtown area. Yet again, they loved it as only toddlers and pre-schoolers can!
Chemo day today so straight to the Kinderpsital post proton therapy, to drop bloods in for testing. Within 20 minutes the results are available in the day care clinic, and we get the news that his blood count is STILL too low to start the next lot of chemo. That means a quick exit, but another nagging worry about whether this is too long to be without the chemo...
The boys are desperate to go on a tram (having been so deprived to never have been on the Nottingham tram even!) so we walk down the hill from the hospital and catch the tram into the downtown area. Yet again, they loved it as only toddlers and pre-schoolers can!
Monday 24 August
A pretty standard day in the life of proton therapy treatment. Treatment started on time, but with Kyle being out this week, Toby was clear he wanted Daddy in with him when it was time for his anaesthetic! A different anaesthetist this week, from the Kinderspital. All of them have been so nice, attentive and interested.
All went well, followed by a relaxed afternoon in Waldshut - a local town - that Kyle and Sam hadn't visited before. A trip to the park was included of course.
All went well, followed by a relaxed afternoon in Waldshut - a local town - that Kyle and Sam hadn't visited before. A trip to the park was included of course.
Monday 24 August 2009
Weekend of 22nd/23rd August
Decided to make the most of Tobes still feeling fine, and made the trip to Lucerne. The old town is lovely, and the two bridges are definitely worthy of a visit. Both boys loved running the entire length of them, happy to miss the 600 year old provenance!
The highlight was Mount Pilatus. With weather at the bottom being pretty grey and gloomy, we did wonder whether we'd get any view at all if we went up the mountain. A boat across the lake, followed by a cog train that travelled up the mountain at a very steep 47%, left the boys in ecstasy. Luckily the fellow passengers appreciated seeing the boys whoop and yelp with excitement. As we went higher, we went above cloud level and were treated to some fantastic views of the Alps as we looked south. A cable car down and a stop off at the Rodelbahn (summer toboggan run) gave the boys their fill of transport methods for one day. Once at the bottom of the mountain though, they were still thrilled with a trolley-bus journey back to the centre of Lucerne, before heading back to Bad Zurzach.
The highlight was Mount Pilatus. With weather at the bottom being pretty grey and gloomy, we did wonder whether we'd get any view at all if we went up the mountain. A boat across the lake, followed by a cog train that travelled up the mountain at a very steep 47%, left the boys in ecstasy. Luckily the fellow passengers appreciated seeing the boys whoop and yelp with excitement. As we went higher, we went above cloud level and were treated to some fantastic views of the Alps as we looked south. A cable car down and a stop off at the Rodelbahn (summer toboggan run) gave the boys their fill of transport methods for one day. Once at the bottom of the mountain though, they were still thrilled with a trolley-bus journey back to the centre of Lucerne, before heading back to Bad Zurzach.
Friday 21st August
All went well at the PSI, and Toby had a great afternoon playing contentedly (his behaviour the best of all week).
His eye is still doing really well, with him not complaining of any pain, not rubbing or scratching it, and certainly no signs of infection. Possibly slightly bloodshot, but really the biggest thing to note is just the pinknes of his skin. Something Martina, the anaesthetist yeterday, assured me was as much to do with the sticking plaster they use to tape his eye open during the treatment, as much as the radiation itself. Still nothing unusual in his appetite, or feeling sick either, which is great news. He's getting (marginally) happier about having the drops in his eyes too.
I've signed up to unlimited international calls with Skype for a month. All for 10 Euros. Called my university friend in South Africa, after Tobes went to bed, and before I had to wake him to take him to the airport to collect Kyle and Sam again.
His eye is still doing really well, with him not complaining of any pain, not rubbing or scratching it, and certainly no signs of infection. Possibly slightly bloodshot, but really the biggest thing to note is just the pinknes of his skin. Something Martina, the anaesthetist yeterday, assured me was as much to do with the sticking plaster they use to tape his eye open during the treatment, as much as the radiation itself. Still nothing unusual in his appetite, or feeling sick either, which is great news. He's getting (marginally) happier about having the drops in his eyes too.
I've signed up to unlimited international calls with Skype for a month. All for 10 Euros. Called my university friend in South Africa, after Tobes went to bed, and before I had to wake him to take him to the airport to collect Kyle and Sam again.
Wednesday 19th and Thursday 20th August
Wednesday's treatment passed uneventfully, other than a short delay. Everything is definitely becoming very familiar now. The big news of the day was that the UK is finally going to get a proton therapy centre. It was on East Midlands Today, Channel 4 and Sky News. Thank goodness for the internet. It's fantastic news. I really hope now the delivery of the centre is well planned and thought out. Something I'd be happy to contribute to should they need parental input from previous proton therapy experiences.
Thursday's treatment was also fine. It's now a clear chain of events. We arrive at the PSI, the security officers clearly recognise the only British number plate on site (!) and wave us through, (to which Toby waves back!), we get to the waiting room where Toby want to do drawing or play with trains. He then gets called through, and starts the mantra about getting his 'beads' and not wanting 'the wire'. By this he's referring to not wanting the anaesthetic on slow drip and attached to him. Seems he's better at having it pushed through quickly for a get on with it approach to knocking him out. The wigglies have a drink of water and then a drink of milk..as he understands it.
I then get to go for a coffee and a read of my book (now finished Angels and Demons and reading some rubbish called 'From Flab to Fab', which tries to dispel many health diet and exercise myths. Those who know me know how I love my trivia! Really do need something more taxing though) and then about an hour later I go back to the waiting room and they call me through when Tobes is ready. I go into the recovery room and wait another 10-15minutes for him to wake up and then it's back to waiting on him hand and foot.
I did get to speak to Anthony Lomax today however. I recognised his name from one of the research papers we'd read, and it turns out he's from Manchester but has been at the PSI for 17 years. He's a medical physicist, and we discussed the news that yesterday it was announced the UK would get a proton therapy centre. He knew the news was imminent as is involved with the National Commissioning Group (NCG). They are the team who approve cases for proton therapy abroad. He gave a bit of an insight into where we should try and visit while we're over here, and also into how his role differs from the doctors over here.
In the afternoon, we went out for a bike ride. The hottest day of our time over here seemed to be a perfectly good choice, (not!) for such an event. 37 degree heat, and only planning on a small trip, I didn't take any real kit, but sure enough, my handlebars decided to work loose, affecting the angle at which my hands could control them. Luckily there is a bike shop in every village over here so I stopped at the first one, popped in and was cheeky enough to ask whether they'd mind tightening up the headset, and a minute later we were back on our way, and hot and sweaty all over again! We followed the well marked and well maintained bike routes, which happened to mirror the railway line and Toby was in his element every time we saw a train, and even when we passed a couple of old redundant ones in a siding!
Thursday's treatment was also fine. It's now a clear chain of events. We arrive at the PSI, the security officers clearly recognise the only British number plate on site (!) and wave us through, (to which Toby waves back!), we get to the waiting room where Toby want to do drawing or play with trains. He then gets called through, and starts the mantra about getting his 'beads' and not wanting 'the wire'. By this he's referring to not wanting the anaesthetic on slow drip and attached to him. Seems he's better at having it pushed through quickly for a get on with it approach to knocking him out. The wigglies have a drink of water and then a drink of milk..as he understands it.
I then get to go for a coffee and a read of my book (now finished Angels and Demons and reading some rubbish called 'From Flab to Fab', which tries to dispel many health diet and exercise myths. Those who know me know how I love my trivia! Really do need something more taxing though) and then about an hour later I go back to the waiting room and they call me through when Tobes is ready. I go into the recovery room and wait another 10-15minutes for him to wake up and then it's back to waiting on him hand and foot.
I did get to speak to Anthony Lomax today however. I recognised his name from one of the research papers we'd read, and it turns out he's from Manchester but has been at the PSI for 17 years. He's a medical physicist, and we discussed the news that yesterday it was announced the UK would get a proton therapy centre. He knew the news was imminent as is involved with the National Commissioning Group (NCG). They are the team who approve cases for proton therapy abroad. He gave a bit of an insight into where we should try and visit while we're over here, and also into how his role differs from the doctors over here.
In the afternoon, we went out for a bike ride. The hottest day of our time over here seemed to be a perfectly good choice, (not!) for such an event. 37 degree heat, and only planning on a small trip, I didn't take any real kit, but sure enough, my handlebars decided to work loose, affecting the angle at which my hands could control them. Luckily there is a bike shop in every village over here so I stopped at the first one, popped in and was cheeky enough to ask whether they'd mind tightening up the headset, and a minute later we were back on our way, and hot and sweaty all over again! We followed the well marked and well maintained bike routes, which happened to mirror the railway line and Toby was in his element every time we saw a train, and even when we passed a couple of old redundant ones in a siding!
Tuesday 18 August 2009
Tuesday 18th August
Back to a later start time for treatment today (10.15am), and that combined with a delay due to a technical hitch (read repair from that!) meant Toby didn't go under until gone 11.30.
In the hour we were waiting we had our weekly meeting with the research doctor. A different person to last week, but again, all in german, covering how Toby has been feeling.
In fact,he's been fine so far, with no pain (that he's told me of anyway), as active as normal, with no signs of undue tiredness, and his appetite remains normal. In fact the only thing that could be construed as different is that stubborness of his that seems to have multiplied since being here. Determined he can do everything, and that he wants to make the decision on when he does things. Discipline feels like it should be the last thing to have to cope with now, but I'm standing firm! No Roary the Racing Car on DVD yesterday for him as a result of this.
The red sunburnt looking cheek from last week went down over the weekend, but is back again this evening. He's getting a bit better about having the eye drops, but frankly has a long way to go on this.
The anaesthetist was also very chatty today, telling me lots about how the PSI works. It's actually a massive physics research institute that then sells their technology/discoveries/applications to industry, once they've been fine tuned. The treatment that Toby is having is not their main business, but his case is perfect for their research on the treatment method. Their latest research is into how to treat tumours that move ie in the lungs and breast. A proton therapy centre is due to open in Essen in Germany later this year, and one of the PSI founders of proton therapy treatment will return there, to where her family is. She left the PSI a couple of months ago, but is still retained on a consultancy basis. It's her name I recognised from some of the research papers we obtained when we first started researching proton therapy. Beate Timmerman. The expertise at PSI is clearly the best there is. Scandinavia are planning on having their own proton therapy centre, and on the news in the UK this morning, the British Government have announced their intention to build a centre in the UK. Hooray. Well done to Ros Barnes for lobbying on this. She sent her little boy to the U.S. for proton therapy treatment and has taken on the challenge to bring such a facility to the UK. She was also a huge help and support to us when we wanted to get an application in to the NHS
Our trip to the Kinderspital was therefore later than planned. The doctor did the usual checks, and questions (in german - that's 2 massive conversations for one day, a record so far I think). Then the blood results came through, showing a neutrophil count of 0.5. Even lower than last week, and now classed as neutropenic, despite having stopped the chemo as per the treatment protocol. I'd anticipated the count going up and us needing to call QMC in Nottingham to see if they had a view on whether we should restart chemo at this point in the cycle, but clearly no need. The doctor suggested, and I agreed, that chemo would not be a good idea right now. The proton therapy can knock the blood count, and still being quite early in the treatment, it's hard to know what is attributed to the proton therapy, and what is the chemo, or more likely what's the result form both together. Plan was to review again next week.
In the hour we were waiting we had our weekly meeting with the research doctor. A different person to last week, but again, all in german, covering how Toby has been feeling.
In fact,he's been fine so far, with no pain (that he's told me of anyway), as active as normal, with no signs of undue tiredness, and his appetite remains normal. In fact the only thing that could be construed as different is that stubborness of his that seems to have multiplied since being here. Determined he can do everything, and that he wants to make the decision on when he does things. Discipline feels like it should be the last thing to have to cope with now, but I'm standing firm! No Roary the Racing Car on DVD yesterday for him as a result of this.
The red sunburnt looking cheek from last week went down over the weekend, but is back again this evening. He's getting a bit better about having the eye drops, but frankly has a long way to go on this.
The anaesthetist was also very chatty today, telling me lots about how the PSI works. It's actually a massive physics research institute that then sells their technology/discoveries/applications to industry, once they've been fine tuned. The treatment that Toby is having is not their main business, but his case is perfect for their research on the treatment method. Their latest research is into how to treat tumours that move ie in the lungs and breast. A proton therapy centre is due to open in Essen in Germany later this year, and one of the PSI founders of proton therapy treatment will return there, to where her family is. She left the PSI a couple of months ago, but is still retained on a consultancy basis. It's her name I recognised from some of the research papers we obtained when we first started researching proton therapy. Beate Timmerman. The expertise at PSI is clearly the best there is. Scandinavia are planning on having their own proton therapy centre, and on the news in the UK this morning, the British Government have announced their intention to build a centre in the UK. Hooray. Well done to Ros Barnes for lobbying on this. She sent her little boy to the U.S. for proton therapy treatment and has taken on the challenge to bring such a facility to the UK. She was also a huge help and support to us when we wanted to get an application in to the NHS
Our trip to the Kinderspital was therefore later than planned. The doctor did the usual checks, and questions (in german - that's 2 massive conversations for one day, a record so far I think). Then the blood results came through, showing a neutrophil count of 0.5. Even lower than last week, and now classed as neutropenic, despite having stopped the chemo as per the treatment protocol. I'd anticipated the count going up and us needing to call QMC in Nottingham to see if they had a view on whether we should restart chemo at this point in the cycle, but clearly no need. The doctor suggested, and I agreed, that chemo would not be a good idea right now. The proton therapy can knock the blood count, and still being quite early in the treatment, it's hard to know what is attributed to the proton therapy, and what is the chemo, or more likely what's the result form both together. Plan was to review again next week.
Monday 17th August
This is the last morning for now, when Toby's treatment starts early in the morning. Prompt as ever, we were back at the flat by 10.30 am. Another afternoon at the outdoor pool loomed as the temperature was so hot (33 degrees Celsius) that anything else felt a bit too strenuous. Toby had fun and it was much quieter than yesterday so he had lots of options without too much risk of being pushed, pulled or splashed too much by other children.
In the evenings, I've been using Skype to call home. Video conferencing has been great to see Sam in the evenings and chat. Just to see his face and talk about the little things in his day. I've now got unlimited international phone calls too for a month, for 10 Euros using Skype. Hooray!
In the evenings, I've been using Skype to call home. Video conferencing has been great to see Sam in the evenings and chat. Just to see his face and talk about the little things in his day. I've now got unlimited international phone calls too for a month, for 10 Euros using Skype. Hooray!
Weekend of 15th/16th August
All back together as a family and Toby was feeling fine so we headed out for the day to a town called Stein am Rhein, north east of where we are staying, on the way to Lake Constance (Bodensee). It was a beautiful town with buildings decorated with frescoes from the 16th century. The boys of course were interested for about 30 seconds, so we headed down to the riverside, where the simplest of things were enjoyed. Particularly funny was a local dog that was intent on jumping in to the river over and over again. Toby and Sam found it mesmerising and hilarious as you'd expect at their age. A miniature railway offered rides for children and parents, so that, combined with watching some boats, an ice cream and paddling in the river up to their waists (no change of clothes but why worry? I can certainly remember occasions like that from back in the 70's!)made for a lovely day out.
Of course both boys then fell asleep in the car on the way home, and then insisted on chattering for hours come bedtime!
Sunday was a trip to the local outdoor pool, given the weather has been so good. We're not sure when it will break so thought we should make the most of it...is that a British approach though, with no two days being the same at home?!! Although Toby isn't allowed to swim due to his central line, I followed him around the toddler paddling pool ready to catch him if he slipped. He seems to know he needs to keep it dry. He still enjoyed splashing about, but was less happy when Sam got to go down the slide and into the bigger pool, and he realised that he couldn't join him. We couldn't win really though - to not go would deny Sam some fun, and yet to go denies Toby some fun. Life's never going to be fair in this situation, so we went anyway. The sadness hit all over again at one point, like a punch in the stomach, that something as simple as a day at a swimming pool is compromised with the treatment of this illness. Roll on the end of the treatment.
Of course both boys then fell asleep in the car on the way home, and then insisted on chattering for hours come bedtime!
Sunday was a trip to the local outdoor pool, given the weather has been so good. We're not sure when it will break so thought we should make the most of it...is that a British approach though, with no two days being the same at home?!! Although Toby isn't allowed to swim due to his central line, I followed him around the toddler paddling pool ready to catch him if he slipped. He seems to know he needs to keep it dry. He still enjoyed splashing about, but was less happy when Sam got to go down the slide and into the bigger pool, and he realised that he couldn't join him. We couldn't win really though - to not go would deny Sam some fun, and yet to go denies Toby some fun. Life's never going to be fair in this situation, so we went anyway. The sadness hit all over again at one point, like a punch in the stomach, that something as simple as a day at a swimming pool is compromised with the treatment of this illness. Roll on the end of the treatment.
Sunday 16 August 2009
Heading out to Switzerland
Sat 1st August
7.30pm - the deadline was set by text last night. To just a few close local friends, please join us for a goodbye drink. We'd have to have the car packed, and drinks would be in the bottle/can, or some leftover plastic cups from the treasure trail, to save on clearing up, but at least we could thank people for their support and have a catch up before leaving.
Normally, to go on holiday, we'd end up packing until midnight, but setting ourselves the slightly ridiculous task of being ready by 7.30pm, it actually meant we got to relax for a few hours, after the craziness of the last month, and before the next phase started.
Sunday 2nd August.
The Archers and Gormleys came to wave us off. 7.45am on a Sunday. That's dedication. Lovely to have such caring friends, and made all the more emotional to say goodbye.
The journey was fine with no delays, and the channel tunnel crossing saved a couple of hours compared to the ferry. The in-car DVD players made an entrance for the boys once we were on the continent and worked a treat. We arrived at Mettlach, just in Germany, at about 6pm. We'd packed a separate bag for the night so the car could stay packed up. A lovely wooded, quiet, safe area, meant a quick walk with the boys down a leafy lane, before some dinner in the dining area. Just a few locals propping up the bar, us (sitting outside much to their amusement - we thought it warm enough, they weren't convinced!) and the local drunk who insisted on scaring the living daylights out of Sam and Tobes by bringing his massive dog just a bit too close. It could almost have felt like a holiday if it weren't for thoughts turning to the reason for being there.
Monday 3rd August.
Breakfast and a shorter journey today - perhaps 4 or 5 hours in total, compared to yesterday's 9 hours. Until 9am anyway. That was when the PSI called to see if we could attnd an appointment later that day, rather than the one planned for the following morning. One of the children being treated was in hospital with an infection and they wanted to use the slot if at all possible. We calculated we could make it so agreed. We had hoped to arrive at the flat early afternoon, get some food in and get unpacked ready for the appointment the next day. Instead we bombed down the motorway, hit some horrible weather and traffic around Strasbourg and watched the estimated arrival time on the sat nav get nearer and nearer the appointment time! We made it in the end, just 10 minutes late.
A wait of a further 30 mins and Toby was taken through for another CT scan. They'd done one at the pre-visit, but the team had then reviewed his case. They decided they could reduce some damage to his eye/cornea if they did a CT scan with his eyes open, and then used the scan to adjust the planning fields, with a view to then doing the treatment with his eyes open rather than closed.
By the time we got away that afternoon and arrived at the flat, the local supermarket was closed. Dinner was at the self-service cafe at the Thermal Baths, about 150 metres from where we were staying!
With only one bedroom, all 4 of us were like sardines in the bedroom that night. More challenging was getting both boys to go to sleep! Chatter, play and mischief prevailed for far too long!
7.30pm - the deadline was set by text last night. To just a few close local friends, please join us for a goodbye drink. We'd have to have the car packed, and drinks would be in the bottle/can, or some leftover plastic cups from the treasure trail, to save on clearing up, but at least we could thank people for their support and have a catch up before leaving.
Normally, to go on holiday, we'd end up packing until midnight, but setting ourselves the slightly ridiculous task of being ready by 7.30pm, it actually meant we got to relax for a few hours, after the craziness of the last month, and before the next phase started.
Sunday 2nd August.
The Archers and Gormleys came to wave us off. 7.45am on a Sunday. That's dedication. Lovely to have such caring friends, and made all the more emotional to say goodbye.
The journey was fine with no delays, and the channel tunnel crossing saved a couple of hours compared to the ferry. The in-car DVD players made an entrance for the boys once we were on the continent and worked a treat. We arrived at Mettlach, just in Germany, at about 6pm. We'd packed a separate bag for the night so the car could stay packed up. A lovely wooded, quiet, safe area, meant a quick walk with the boys down a leafy lane, before some dinner in the dining area. Just a few locals propping up the bar, us (sitting outside much to their amusement - we thought it warm enough, they weren't convinced!) and the local drunk who insisted on scaring the living daylights out of Sam and Tobes by bringing his massive dog just a bit too close. It could almost have felt like a holiday if it weren't for thoughts turning to the reason for being there.
Monday 3rd August.
Breakfast and a shorter journey today - perhaps 4 or 5 hours in total, compared to yesterday's 9 hours. Until 9am anyway. That was when the PSI called to see if we could attnd an appointment later that day, rather than the one planned for the following morning. One of the children being treated was in hospital with an infection and they wanted to use the slot if at all possible. We calculated we could make it so agreed. We had hoped to arrive at the flat early afternoon, get some food in and get unpacked ready for the appointment the next day. Instead we bombed down the motorway, hit some horrible weather and traffic around Strasbourg and watched the estimated arrival time on the sat nav get nearer and nearer the appointment time! We made it in the end, just 10 minutes late.
A wait of a further 30 mins and Toby was taken through for another CT scan. They'd done one at the pre-visit, but the team had then reviewed his case. They decided they could reduce some damage to his eye/cornea if they did a CT scan with his eyes open, and then used the scan to adjust the planning fields, with a view to then doing the treatment with his eyes open rather than closed.
By the time we got away that afternoon and arrived at the flat, the local supermarket was closed. Dinner was at the self-service cafe at the Thermal Baths, about 150 metres from where we were staying!
With only one bedroom, all 4 of us were like sardines in the bedroom that night. More challenging was getting both boys to go to sleep! Chatter, play and mischief prevailed for far too long!
Friday 14th August
Treatment all went very smoothly and according to plan again today. Tobes was put under just after 8 am and I was called back for him at 9am. We were back at the flat by 10.30. The plan was to do some food shopping before Kyle and Sam came out for the weekend, and do a spot of tidying up, so the time we spent with them could be doing more interesting things.
Frau Monica, the manager of the flats here, called at about 11am with the opportunity of us moving flat. She knew we wanted a bigger flat, and although this was the same size (still only a 1-bedroom flat, and the same room layout) we took a look, and it definitely felt a better option. The nature of the furniture and how it was arranged made the flat feel a lot bigger, and the dining table had 4 chairs not 2, so at least when Kyle and Sam came out we could all sit down together for meals. Of course then the reality of moving flat set in! Down 3 flights of stairs and up 5 flights of stairs from one flat to the other. Not just everything we'd packed for 6 weeks, but the food in the cupboards, fridge etc. And with the temperature outside nearly 30 degrees, it made for a good work out!
Tobes was bribed to sit still with a DVD of Roary the Racing Car on the laptop while I nipped out and back between the two flats. Halfway in though, his attention was turned to 'helping' me. Shame anything heavier than a box of cereal was beyond him when it came to the stairs...and actually, even a box of cereal was too large for him to then hold on to the banister! Finally got finished about 4pm! Quick nip across the border to get some groceries (so much cheaper in Germany but got to be careful about customs - limits are v low on things like milk even) and then dinner, bath and bed for Tobes. I'd have to wake him at 9pm to go and collect Sam and Kyle from the airport.
The flight from Birmingham was on time, and it was great to see them both and us all be back together. How you can take the obvious stuff for granted. When I asked Sam if he'd missed us, he replied steadily that he'd been much too busy to miss us. A day out with a friend of mine and her children, 3 days at nursery and a day with another friend all seemed to go down well. I know I should be grateful he seems unfazed by it all so far.
Frau Monica, the manager of the flats here, called at about 11am with the opportunity of us moving flat. She knew we wanted a bigger flat, and although this was the same size (still only a 1-bedroom flat, and the same room layout) we took a look, and it definitely felt a better option. The nature of the furniture and how it was arranged made the flat feel a lot bigger, and the dining table had 4 chairs not 2, so at least when Kyle and Sam came out we could all sit down together for meals. Of course then the reality of moving flat set in! Down 3 flights of stairs and up 5 flights of stairs from one flat to the other. Not just everything we'd packed for 6 weeks, but the food in the cupboards, fridge etc. And with the temperature outside nearly 30 degrees, it made for a good work out!
Tobes was bribed to sit still with a DVD of Roary the Racing Car on the laptop while I nipped out and back between the two flats. Halfway in though, his attention was turned to 'helping' me. Shame anything heavier than a box of cereal was beyond him when it came to the stairs...and actually, even a box of cereal was too large for him to then hold on to the banister! Finally got finished about 4pm! Quick nip across the border to get some groceries (so much cheaper in Germany but got to be careful about customs - limits are v low on things like milk even) and then dinner, bath and bed for Tobes. I'd have to wake him at 9pm to go and collect Sam and Kyle from the airport.
The flight from Birmingham was on time, and it was great to see them both and us all be back together. How you can take the obvious stuff for granted. When I asked Sam if he'd missed us, he replied steadily that he'd been much too busy to miss us. A day out with a friend of mine and her children, 3 days at nursery and a day with another friend all seemed to go down well. I know I should be grateful he seems unfazed by it all so far.
Thursday 13 August 2009
Glossary of terms
We've had to learn so much stuff, thought it might be useful to readers to explain some of the terms we now use as everyday language. This part will get updated no doubt...
Rhabdomyosarcoma
The type of cancer that Toby has. A childhood cancer of the muscle. In his case it's in the orbit, the muscle surrounding his eye.
Central line/Hickman line
A wire that comes out of Toby's chest that is used to administer chemotherapy, take blood samples, or give anaesthetics. Essentially a semi-permanent cannula, giving access to the blood stream. 'Wigglies' is the term used for/with children.
Neutrophils
A type of white blood cell. They are key players in our immunity systems, and get hit hard by chemo. A blood reading of 0.5 or less indicates neutropenia - high risk of picking up infections, but also limited ability for the body to fight it off. A key indicator as to whether more chemo is given ie whether the body can take it or not. Normal reading are nearer to 5, or above.
PSI Paul Scherrer Institut
The proton therapy treatment centre, located about 20 miles north west of Zurich. It's primary function is using protons for physics research. Proton therapy for cancer patients is a small part of what they do overall.
Kinderspital
The children's hospital in central Zurich. They are providing the oncology care similar to that QMC has been doing while at home in England. Chemotherapy, blood tests, etc.
Universitätspital
The main university hospital in Zurich. The opthalmic team are based here, keeping check on all issues arising from his treatment, relating to his eye function.
Local control
A term to describe the need for killing the cancer in the original site. Chemotherapy is a systemic approach and surgery/radiotherapy/proton therapy provides local control. You need both for the best chance of a cure.
Rhabdomyosarcoma
The type of cancer that Toby has. A childhood cancer of the muscle. In his case it's in the orbit, the muscle surrounding his eye.
Central line/Hickman line
A wire that comes out of Toby's chest that is used to administer chemotherapy, take blood samples, or give anaesthetics. Essentially a semi-permanent cannula, giving access to the blood stream. 'Wigglies' is the term used for/with children.
Neutrophils
A type of white blood cell. They are key players in our immunity systems, and get hit hard by chemo. A blood reading of 0.5 or less indicates neutropenia - high risk of picking up infections, but also limited ability for the body to fight it off. A key indicator as to whether more chemo is given ie whether the body can take it or not. Normal reading are nearer to 5, or above.
PSI Paul Scherrer Institut
The proton therapy treatment centre, located about 20 miles north west of Zurich. It's primary function is using protons for physics research. Proton therapy for cancer patients is a small part of what they do overall.
Kinderspital
The children's hospital in central Zurich. They are providing the oncology care similar to that QMC has been doing while at home in England. Chemotherapy, blood tests, etc.
Universitätspital
The main university hospital in Zurich. The opthalmic team are based here, keeping check on all issues arising from his treatment, relating to his eye function.
Local control
A term to describe the need for killing the cancer in the original site. Chemotherapy is a systemic approach and surgery/radiotherapy/proton therapy provides local control. You need both for the best chance of a cure.
Thurs 13 August - First trip to the eye clinic at the Universitätspital
Treatment all done and dusted by 10am today. The earliest so far. The anaesthetists have been fantastic with Toby. Friendly, caring, and chatty too. Part of the routine before he gets put to sleep, is to choose a 'bead' which represents his daily CT scan and daily proton therapy. They then get threaded onto a thread which can be hung on his cot, and we can see it get longer as the treatment progresses. He loves choosing them now and today was very chatty about the colour of the wrapping around his wiggglies. He's getting more predictable when he comes round after the anaesthetic, normally demanding food before his eyes are fully open! After breakfast in bed, he's ready to go - no hanging around for the little fella.
We had an appointment with the opthalmic team today, for them to check the cornea of Toby's eye, so decided to head in the direction of Zurich Universitätspital, and call in at a small town called Brugg, en route. Plan was to see if I could get a dongle for internet access, more cheaply than that offered at the flat. Short answer was no, but a bit more language practise added to the pile!
On to Zurich, still with the safety of sat nav. We've visited the Kinderspital, where they do the oncology checks, but this appointment was at the main university hospital. Made our way to the main entrance, to then have to retrace our steps back to Nord 2 building, before it got more interesting. I had to fill out a form as this was the first visit. I'd hoped our registration at the Kinderspital (1/4 mile up the road) would have covered this, but apparently not. The systems or processes are different, so the issue of insurance came up. I explained the NHS arrangement with PSI and Kinderspital, but unfortunately the receptionist didn't seem to think this mattered! 20 minutes of discussion, all in german, with Toby thoroughly bored, tugging at my sleeve, moaning, wanting attention and needing the toilet...
Eventually they sent us through to see the doctor. He wasn't familiar with the financial side of things, but seemed he was able to organise for someone to phone the PSI and Kinderspital(obvious, but the receptionist wouldn't/couldn't do this...Computer says 'no'!!!). Unsurprisingly they confirmed everything was in order and we were rolling. A quick check of Toby's cornea, showed it to be ok still, but a prescription for some drops to help throughout the treatment, where a dry eye is likely.
Interstingly, the building was huge, spacious, with very few people around, hence a sense of calm and control in the hospital. The equipment in the consulting room all looked quite old/manual, but immacualte in terms of how it had obviously been cared for and used.
Back to the flat for a late lunch, and a sit down, then out on the bike for a quick bike ride. Called in at the pharmacy to collect the prescriptions, and then caught some fresh air down by the river. The highlight for Tobes though? Crossing the railway line. Well, a train might have been near after all!!
Got back to the flat to find we were locked out. The key just kept spinning in the lock! This was the door at the front of the complex, so luckily after buzzing another flat owner, they let us in. Slightly embarrassing, but slightly more worrying for when we go out tomorrow!
We had an appointment with the opthalmic team today, for them to check the cornea of Toby's eye, so decided to head in the direction of Zurich Universitätspital, and call in at a small town called Brugg, en route. Plan was to see if I could get a dongle for internet access, more cheaply than that offered at the flat. Short answer was no, but a bit more language practise added to the pile!
On to Zurich, still with the safety of sat nav. We've visited the Kinderspital, where they do the oncology checks, but this appointment was at the main university hospital. Made our way to the main entrance, to then have to retrace our steps back to Nord 2 building, before it got more interesting. I had to fill out a form as this was the first visit. I'd hoped our registration at the Kinderspital (1/4 mile up the road) would have covered this, but apparently not. The systems or processes are different, so the issue of insurance came up. I explained the NHS arrangement with PSI and Kinderspital, but unfortunately the receptionist didn't seem to think this mattered! 20 minutes of discussion, all in german, with Toby thoroughly bored, tugging at my sleeve, moaning, wanting attention and needing the toilet...
Eventually they sent us through to see the doctor. He wasn't familiar with the financial side of things, but seemed he was able to organise for someone to phone the PSI and Kinderspital(obvious, but the receptionist wouldn't/couldn't do this...Computer says 'no'!!!). Unsurprisingly they confirmed everything was in order and we were rolling. A quick check of Toby's cornea, showed it to be ok still, but a prescription for some drops to help throughout the treatment, where a dry eye is likely.
Interstingly, the building was huge, spacious, with very few people around, hence a sense of calm and control in the hospital. The equipment in the consulting room all looked quite old/manual, but immacualte in terms of how it had obviously been cared for and used.
Back to the flat for a late lunch, and a sit down, then out on the bike for a quick bike ride. Called in at the pharmacy to collect the prescriptions, and then caught some fresh air down by the river. The highlight for Tobes though? Crossing the railway line. Well, a train might have been near after all!!
Got back to the flat to find we were locked out. The key just kept spinning in the lock! This was the door at the front of the complex, so luckily after buzzing another flat owner, they let us in. Slightly embarrassing, but slightly more worrying for when we go out tomorrow!
Tuesday 11 August 2009
Preparation for trip to Switzerland
It's only on reflection that the preparation side of this trip probably warrants a post of its own! Having spent so long focusing on getting NHS approval, and fundraising to cover our own costs, the small matter of actually arranging the trip felt like the smallest, easiest, and least important thing to do... until now. Of course everything that was needed had been planned in our heads months ago, just turning it into a physical reality was at the bottom of the list.
We knew taking our own car and driving to Switzerland would be the best option in terms of flexibility and keeping costs down. Only as time went on did I appreciate what else it would offer. The option of quickly and conveniently picking up family and friends from the airport who would come out to support. The possibility of us taking our bikes out with us. This would mean I could keep my own fitness up, even though I'd be with Toby 24-7, and without any childcare options. This was important to me, having kept my running going throughout the entire time since Toby's diagnosis, and my fitness at a reasonable level. And an important and effective controller of stress too. As any runner will tell you, you can't beat that post-run feeling.
Driving meant that, realistically, with two young children, we'd need to break the journey overnight. We chose the Channel Tunnel, to save time, rather than the ferry. Having planned the route, we then looked on Google Earth to see where was close by, but also where was quiet enough for us not to be concerned at the fact our car would be left packed up overnight and with bikes on the back. It turned out to be a town called Mettlach, on the german side of the Germany-Luxembourg border, very near to where we'd been on holiday last year.
Moneywise, Euros and Swiss Francs were then needed. As it happened, the town in Switzerland we'd be staying in is next to the german border so we'd need both currencies throughout the trip anyway.
Organising accommodation for Switzerland also was simple. The PSI (the acronym for the proton therapy treatment centre - Paul Scherrer Institut) had obviously done this before and booked us a flat (our request - hotel rooms and kids are just too high maintenance!) in a nearby town, called Bad Zurzach. Everything set...until we realised they'd booked a 2 room flat, not a 2 bedroomed flat. And of course being August, everything else was booked up. Again, given what else we'd been through, we knew we could either sort it out once out there, or live with being a bit cramped and use every opportunity to get out.
The two more challenging areas to organise were mobile phones and internet access. Both necessities for a trip like this, and both needing a considerable amount of time to research, given the complexity of offer. Not wanting to pay the rates at the accommodation (5 Francs per day - c. £3) we knew a mobile USB stick would be best for the internet. We just ran out of time to organise before leaving. Again, we could sort once there. A request to Virgin Mobile, to view the situation charitably was submitted, but a week in, with no response from them, it's irritatingly still on the to-do list.
Other things not to leave home without:
We knew taking our own car and driving to Switzerland would be the best option in terms of flexibility and keeping costs down. Only as time went on did I appreciate what else it would offer. The option of quickly and conveniently picking up family and friends from the airport who would come out to support. The possibility of us taking our bikes out with us. This would mean I could keep my own fitness up, even though I'd be with Toby 24-7, and without any childcare options. This was important to me, having kept my running going throughout the entire time since Toby's diagnosis, and my fitness at a reasonable level. And an important and effective controller of stress too. As any runner will tell you, you can't beat that post-run feeling.
Driving meant that, realistically, with two young children, we'd need to break the journey overnight. We chose the Channel Tunnel, to save time, rather than the ferry. Having planned the route, we then looked on Google Earth to see where was close by, but also where was quiet enough for us not to be concerned at the fact our car would be left packed up overnight and with bikes on the back. It turned out to be a town called Mettlach, on the german side of the Germany-Luxembourg border, very near to where we'd been on holiday last year.
Moneywise, Euros and Swiss Francs were then needed. As it happened, the town in Switzerland we'd be staying in is next to the german border so we'd need both currencies throughout the trip anyway.
Organising accommodation for Switzerland also was simple. The PSI (the acronym for the proton therapy treatment centre - Paul Scherrer Institut) had obviously done this before and booked us a flat (our request - hotel rooms and kids are just too high maintenance!) in a nearby town, called Bad Zurzach. Everything set...until we realised they'd booked a 2 room flat, not a 2 bedroomed flat. And of course being August, everything else was booked up. Again, given what else we'd been through, we knew we could either sort it out once out there, or live with being a bit cramped and use every opportunity to get out.
The two more challenging areas to organise were mobile phones and internet access. Both necessities for a trip like this, and both needing a considerable amount of time to research, given the complexity of offer. Not wanting to pay the rates at the accommodation (5 Francs per day - c. £3) we knew a mobile USB stick would be best for the internet. We just ran out of time to organise before leaving. Again, we could sort once there. A request to Virgin Mobile, to view the situation charitably was submitted, but a week in, with no response from them, it's irritatingly still on the to-do list.
Other things not to leave home without:
- sat nav with european coverage
- borrowed DVD players for the boys on a long journey (how will that work with Toby's travel sickness though??!!!)
- on that note...disposable sick bowls (courtesy of QMC!)
- Toby's medicines and medical paraphernalia
- EHIC - that's the new E111 form. Travel insurance (except Tobes who can't get it now) and breakdown cover (probably could change a flat, despite it being 15 years since being shown how, but all things considered, £16 premium was worth it in my book!)
- clothes for all seasons? Switzerland in summer, going into autumn, at low altitude but possibly high altitude for a few days if possible? nightmare...
- packed lunch for on the Channel Tunnel (so glamorous - eating in what feels like a car park!)
- Thomas (the Tank Engine of course!) in various forms..wooden toy, plastic toy, books, DVD...you name it.
oh and...passport.
Even Toby's oral chemotherapy, which should be refrigerated, was stored in the cool bag until we got there!
Pre-visit to Switzerland (2)
Tues 21 July 2009. Up bright and early for a 9 am appointment at the Children's Hospital (Kinderspital) in central Zurich. They will be the team who administer Toby's chemotherapy throughout our coming trip, which will be given alongside the proton therapy.
Finding the hospital was not as easy as we'd hoped. Sat nav guided us to the entrance, but parking is very limited. Parking meters look like they might be white bays, whereas resident permits look like they are blue. We opted for the safety of a car park.
After finding the Poliklinik entrance, we had to report to reception, where a member of staff very efficiently inputted our details, and then took us up to the oncology daycare dept. Very relaxed, and calm, with children all playing very nicely. Some great toys that Sam and Toby loved. A box for some snakes (!), a huge pedal car, and a marble ring thing (think Keppler as per yesterday's construction at th park!). We met a couple of female doctors and a nurse. All spoke very good English, although the nurse was happier to speak German with us. They explained what to do for each week, inlcuding the process for blood tests (drop in at the lab in the basement and by the time you reach the 2nd floor the results will be ready!), which number to dial, depending on whether it's office hours or not, and also, the number to phone just to let them know the timing of when we plan to come in on the Tuesdays for his chemo. Then it was time for a quick coffee in the hospital cafe, and the last time Toby could eat anthing before his anaesthetic that was due in the afternoon.
Then it was back to the hotel in Böttstein, for another visit to the energy place. This time we ventured into the exhibition (free entrance - we soon realised why) to learn the huge factory across the river Are was in fact a nuclear energy plant. Lots of bells and whistles to pull, twist, turn, bang and generally make a noise with, ensured 2 happy little boys, while we killed time waiting for Toby's appointment. Then finally we went back to the PSI for Toby's appointment, at which time, Kyle and Sam took a taxi to nearby Brugg, and then took a direct train back to the airport. Sam was very happy with 3 modes of transport in as many hours. Kyle had a course at work the following day which couldn't be rearranged so needed to be back for that.
Toby's appointment went very smoothly. Started later than planned, and we finally left the place at almost 7pm. Glad we decided to stay that night and come home the next day. While in the waiting room we noticed Toby seemed to have an ear infection. No signs of pain or him pulling at his ear, just some green gunge coming out! Simple in the context of everything else! Interesting how the Swiss approach anaesthetics differently to the British. I was allowed to stay in with him asleep for much longer. The team had a look in both his ears while he was under too, and suggested we call in at the hospital once back in the UK to get the infection cleared up. Also different to the UK was , once the ends of the central line were open, for the anaesthetic, you're not allowed to talk, or you should wear a mask. What was really amusing was the size and the colour of the central line afterwards. The two lines were the size of sausages from the wadding and then coated in bright yellow and bright blue taped covering!
The next morning it was back to the airport. No stress other than traffic on the motorway (that will we/won't we make it feeling...). All smooth, and on time. Called in at QMC on the way home (having picked Sam up from a friend who'd had him while Kyle was back at work) and after a 4 hour wait for antibiotics and drops, we made it back to Bingham.
Finding the hospital was not as easy as we'd hoped. Sat nav guided us to the entrance, but parking is very limited. Parking meters look like they might be white bays, whereas resident permits look like they are blue. We opted for the safety of a car park.
After finding the Poliklinik entrance, we had to report to reception, where a member of staff very efficiently inputted our details, and then took us up to the oncology daycare dept. Very relaxed, and calm, with children all playing very nicely. Some great toys that Sam and Toby loved. A box for some snakes (!), a huge pedal car, and a marble ring thing (think Keppler as per yesterday's construction at th park!). We met a couple of female doctors and a nurse. All spoke very good English, although the nurse was happier to speak German with us. They explained what to do for each week, inlcuding the process for blood tests (drop in at the lab in the basement and by the time you reach the 2nd floor the results will be ready!), which number to dial, depending on whether it's office hours or not, and also, the number to phone just to let them know the timing of when we plan to come in on the Tuesdays for his chemo. Then it was time for a quick coffee in the hospital cafe, and the last time Toby could eat anthing before his anaesthetic that was due in the afternoon.
Then it was back to the hotel in Böttstein, for another visit to the energy place. This time we ventured into the exhibition (free entrance - we soon realised why) to learn the huge factory across the river Are was in fact a nuclear energy plant. Lots of bells and whistles to pull, twist, turn, bang and generally make a noise with, ensured 2 happy little boys, while we killed time waiting for Toby's appointment. Then finally we went back to the PSI for Toby's appointment, at which time, Kyle and Sam took a taxi to nearby Brugg, and then took a direct train back to the airport. Sam was very happy with 3 modes of transport in as many hours. Kyle had a course at work the following day which couldn't be rearranged so needed to be back for that.
Toby's appointment went very smoothly. Started later than planned, and we finally left the place at almost 7pm. Glad we decided to stay that night and come home the next day. While in the waiting room we noticed Toby seemed to have an ear infection. No signs of pain or him pulling at his ear, just some green gunge coming out! Simple in the context of everything else! Interesting how the Swiss approach anaesthetics differently to the British. I was allowed to stay in with him asleep for much longer. The team had a look in both his ears while he was under too, and suggested we call in at the hospital once back in the UK to get the infection cleared up. Also different to the UK was , once the ends of the central line were open, for the anaesthetic, you're not allowed to talk, or you should wear a mask. What was really amusing was the size and the colour of the central line afterwards. The two lines were the size of sausages from the wadding and then coated in bright yellow and bright blue taped covering!
The next morning it was back to the airport. No stress other than traffic on the motorway (that will we/won't we make it feeling...). All smooth, and on time. Called in at QMC on the way home (having picked Sam up from a friend who'd had him while Kyle was back at work) and after a 4 hour wait for antibiotics and drops, we made it back to Bingham.
Pre-visit to Switzerland (1)
Mon 20th July 2009
Thought we´d note down some stuff about the pre-visit for those who are interested.We arrived at the treatment centre (Paul Scherrer Institut - PSI) about 20 miles north west of Zurich, promptly this morning. The radio-oncologist was very nice, spoke good English, but was happy that we could understand German too for some parts that he found difficult. So far any concerns about Swiss German being harder to understand than German, seem unfounded. In fact, the Swiss speak far slower than the Germans! Nevertheless some new vocab has been added to the memory bank. No medical terms or anything useful of course...among others, the word for ´ice cubes´, (Eiswürfel for anyone interested!) as Sam is determined he has to have this in any drink he is currently offered!
The doctor spent what felt like ages with us, and went through the background of how we noticed the mark under Toby´s eye, right through to the exact medication he is currently on. We then met the lead consultant and the anaesthetist, as well as seeing the rooms where Toby will have his daily anaesthetic for treatment and the recovery room.
Tomorrow morning is the visit to the ´Kinderspital´ (Children´s Hospital) in central Zurich, to meet the team for the continued oncology support and care while we are in Switzerland. In the afternoon, it is back to the Paul Scherrer Institut (PSI) for Toby to have a general anesthetic, in order for them to make a full body mould. This is to allow the correct positioning of Toby during his treatment sessions. They will also make a ´bite block´ for his mouth to also aid correct positioning. The procedure is likely to last 2-3 hours, and they will need to interbate, as Toby´s airways will likely be restricted while the bite block is being made.
A day of mixed emotions really, as this is something we´ve spent so long trying to secure, and yet remains something we´d rather not do. The list of potential side effects remains downright depressing. We quickly remind ourselves that this is better than it would have been...
Sam was thoroughly bored of being at the PSI within the 2 hours that we were there. We thought him accompanying us on this visit might be useful for him to realise it won´t be a holiday, and that seems to have done the trick! Toby came across as a totally normal active little boy - running around and more interested in whizzing round on a swivel chair than sitting still!
We did however manage to find a park this afternoon for them both, alongside a rather random Energy exhibition (totally empty, free entrance, right next to the hotel) where they could learn about solar panels among other things. Some construction that looked like a piece of artwork to me, also kept them intersted as they pinged the balls along some channels...something that Kyle assured me was demonstrating Keppler´s law (some physics thing!!).Boys are now fast asleep in bed as I sit here and write this, and Kyle is preparing for a course he´s on on when back at work on Wednesday.
p.s. Weather been beautiful. Sunny with little in the way of cloud, and about 25 degrees. Long may that continue!
Thought we´d note down some stuff about the pre-visit for those who are interested.We arrived at the treatment centre (Paul Scherrer Institut - PSI) about 20 miles north west of Zurich, promptly this morning. The radio-oncologist was very nice, spoke good English, but was happy that we could understand German too for some parts that he found difficult. So far any concerns about Swiss German being harder to understand than German, seem unfounded. In fact, the Swiss speak far slower than the Germans! Nevertheless some new vocab has been added to the memory bank. No medical terms or anything useful of course...among others, the word for ´ice cubes´, (Eiswürfel for anyone interested!) as Sam is determined he has to have this in any drink he is currently offered!
The doctor spent what felt like ages with us, and went through the background of how we noticed the mark under Toby´s eye, right through to the exact medication he is currently on. We then met the lead consultant and the anaesthetist, as well as seeing the rooms where Toby will have his daily anaesthetic for treatment and the recovery room.
Tomorrow morning is the visit to the ´Kinderspital´ (Children´s Hospital) in central Zurich, to meet the team for the continued oncology support and care while we are in Switzerland. In the afternoon, it is back to the Paul Scherrer Institut (PSI) for Toby to have a general anesthetic, in order for them to make a full body mould. This is to allow the correct positioning of Toby during his treatment sessions. They will also make a ´bite block´ for his mouth to also aid correct positioning. The procedure is likely to last 2-3 hours, and they will need to interbate, as Toby´s airways will likely be restricted while the bite block is being made.
A day of mixed emotions really, as this is something we´ve spent so long trying to secure, and yet remains something we´d rather not do. The list of potential side effects remains downright depressing. We quickly remind ourselves that this is better than it would have been...
Sam was thoroughly bored of being at the PSI within the 2 hours that we were there. We thought him accompanying us on this visit might be useful for him to realise it won´t be a holiday, and that seems to have done the trick! Toby came across as a totally normal active little boy - running around and more interested in whizzing round on a swivel chair than sitting still!
We did however manage to find a park this afternoon for them both, alongside a rather random Energy exhibition (totally empty, free entrance, right next to the hotel) where they could learn about solar panels among other things. Some construction that looked like a piece of artwork to me, also kept them intersted as they pinged the balls along some channels...something that Kyle assured me was demonstrating Keppler´s law (some physics thing!!).Boys are now fast asleep in bed as I sit here and write this, and Kyle is preparing for a course he´s on on when back at work on Wednesday.
p.s. Weather been beautiful. Sunny with little in the way of cloud, and about 25 degrees. Long may that continue!
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