Friday 11th September

Toby was in the recovery room when Martina, the lovely anaesthetist, tells me he has a slight temperature.  37.5 degrees.  This in itself is not too bad or dangerous, but when we hit the magic number of 38, it usually means a trip to hospital, and often a stay for a few days.  The last time this happened was February when he was on his intensive chemotherapy.  I'll be gutted if we have to go in, with the end being in sight now.

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 10th September

Another good day with everything done and back at the flat by 10.30am.  We get both the consultants visit today, while we are in the recovery room.  I debriefed them following the Kinderspital and Augenklink appointments.  There is a mention of not knowing about how much eyebrow hair and eyelash hair he will lose, until 3 months time.So far it's all there I think, but it's so blonde it's hard to tell.  Thick hair is not Toby's strong point anyway, having never even had a proper haircut, prior to it all coming out from the chemo last year.   I also mention that Toby woke up in the night and had a nose bleed - not sure which came first though - the nosebleed which woke him, or waking up and then the nosebleed starting after getting upset!   Outcome was that it's all ok to continue though.  BAck to the flat for a quick play (and coffee for me!) , and then it's a trip to the 'Tierpark' - an animal park which we pass on our journey to the PSI everyday.  It's an intriguing affair when we pass it so I'm hoping it'll make an interesting afternoon, nearby, without having to get in the car. 

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. 

Tuesday 8th September

Busy day today with all things health related. Treatment went ahead as usual, as did the Tuesday research questionnaire discussion.  The treatment should finish in just over a week so thoughts of follow-up are starting to form.  They are keen to get as much info as possible and it sounds like they are somewhat used to the home hospitals not always remembering to send check up information to the PSI, in the following months and years, and also the varying amount and quality of it.  They like to do their own check ups if it's possible.  I can see why too.  It must be a real challenge trying to draw out common themes of side effects when everyone has a different cancer, in a different location, in a different aged child, at a different stage/grouping and on different treatment protocols.

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! 

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.

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.

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!